Caring for a Seriously or Chronically Ill Child

When a child is diagnosed with a serious or life-threatening condition, everything changes. Parents must not only face the difficult realization that their child is ill and may be suffering, but also struggle with the task of providing intense, complex, and ongoing medical care.

Palliative (pronounced pal-lee-ay-tiv or pal-yah-tiv) care provides physical, emotional, and spiritual support to sick children and their families. Through a team of medical personnel — including doctors, pain management specialists, nurses, social workers, and therapists — palliative care helps prevent and relieve pain and suffering while also easing stress, anxiety, and the fear associated with serious illness.

Palliative care is not to be confused with end-of-life care or hospice care, which provides care for patients who are not expected to recover. The goal of palliative care is to enhance the quality of life for a child and family during a serious illness and to assist families in making important decisions about their child’s care.

Who Needs Palliative Care?

Any child who has a serious, complex, or life-threatening condition — whether he or she is expected to make a full recovery, live with a lifelong chronic illness, or die from the condition — may be a candidate for palliative care.

Palliative care is helpful for children coping with diseases like cancer; neurological conditions; human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS); and heart, lung, kidney, or liver disease.

Palliative Care vs. Hospice Care

Many people confuse palliative care with end-of-life care, or hospice care. Although hospice care and palliative care programs share a similar goal of providing symptom relief and pain management, the two are not the same:

• Palliative care can be provided at any time during a person’s illness, even from the time of diagnosis. It is not dependent on prognosis (a patient’s outcome) and may be provided along with life-prolonging or curative care. Palliative care can be provided in hospitals, outpatient settings, and at home.
• Hospice care is a specific type of palliative care that focuses solely on providing care to patients who are not expected to recover. It is intended for people who are no longer getting treatment for their medical condition and who are expected to live for 6 months or less. Hospice care may be provided at home, in the hospital, or in a hospice facility.

What Services Are Offered?

Palliative care is designed to meet the unique needs of each child and family. Families can tailor their child’s care, and receive as much or as little help as they want. The palliative care teams might consist of:

• palliative care doctors who provide direct medical care and manage the treatment of physical symptoms, such as pain, nausea, fatigue, shortness of breath, and difficulty sleeping
• nurses who assess the complex needs of the patient and family, facilitate communication with the care team and within the family, and coordinate care among the care team
• social workers who offer counseling, help families navigate the health care system, and provide information about and referrals to other resources
• childlife specialists who address developmental needs, help children understand their condition and participate in decision-making when appropriate, and help maintain a sense of normalcy
• physical and occupational therapists who help children feel more physically comfortable and teach them how to maximize their physical abilities
• art and music therapists who help children explore and express feelings through music, art, poetry, and other creative outlets
• chaplains and other spiritual advisors who provide support and counseling related to spiritual beliefs; they can also provide grief counseling
• massage therapists who promote relaxation, help patients and families manage stress, and provide pain relief
• dietitians who set up healthy meal plans and offer guidelines for nutritious eating
• home health care aides who help patients transition from hospital care to home care and assist with home care needs

Generally, each hospital has its own type of palliative care team. Some teams even include community volunteers who want to help in any way they can.

Who Pays for Palliative Care?

Most health insurance plans cover all or part of palliative care, and many palliative care services are supported by charitable donations. If the cost of palliative care is a concern, a social worker might be able to help provide guidance on covering the cost.

Is Palliative Care Right for Your Child?

Deciding whether or not your child needs palliative care is a personal decision that can only be made after you’ve spoken to your health care provider, considered your child’s and your family’s individual needs, and determined what services are available in your area.

To find services, talk to your health care provider or a representative from your local hospital. You also can research local palliative care services through the National Hospice and Palliative Care Organization by calling 1-800-658-8898.

A Parent’s Role

If you decide that your child would benefit from a palliative care program, remember that the services offered aren’t just for your child, they’re for you, too. Family members caring for seriously ill children face numerous challenges, and palliative care programs can help ease some of these burdens.

While the palliative care team is important, parents and other caregivers play an equally important role in a child’s health. Because you know your child better than anyone else, you are a partner with the palliative care team as you all work toward the same goal — providing the best quality of life for your child for as long as possible.

Physical Therapy Basics

Doctors often recommend physical therapy (PT) for kids and teens who have been injured or who have movement problems from an illness, disease, or disability.

After an injury, physical therapists work to decrease pain, improve movement, and help kids return to daily activities. They teach kids exercises designed to help them regain strength and range of motion, and also show kids and families how to prevent future injuries.

Physical therapy might be needed any time a problem with movement limits someone’s daily activities. So doctors often recommend PT for kids with:

• sports injuries
• developmental delays
• cerebral palsy
• genetic disorders
• orthopedic disabilities/injuries
• heart and lung conditions
• birth defects (such as spina bifida)
• effects of in-utero drug or alcohol exposure
• acute trauma
• head injury
• limb deficiencies
• muscle diseases

What Physical Therapists Do

Physical therapists use a variety of treatments to help build strength, improve movement, and strengthen skills needed to complete daily activities.

Physical therapists might guide kids through:

• developmental activities, such as crawling and walking
• balance and coordination activities
• adaptive play
• aquatic (water) therapy
• improving circulation around injuries by using heat, cold, exercise, electrical stimulation, massage, and ultrasound
• training to build strength around an injury
• flexibility exercises to increase range of motion
• instruction on how to avoid injuries
• safety and prevention programs

During a visit, a physical therapist may:

• measure a child’s flexibility and strength
• analyze how a child walks and runs (the child’s gait)
• identify existing and potential problems
• consult with other medical, psychiatric, and school personnel about an individual education plan (IEP)
• provide instructions for home exercise programs
• recommend when returning to sports is safe

What to Look for in a Physical Therapist

Entry-level physical therapists must receive a doctoral degree in physical therapy (a DPT) from an accredited college program. Physical therapists also must pass a state-administered national exam.

States also may impose their own regulations for practicing PT. You can find out more information about any other requirements for local physical therapists by contacting your state’s licensure board.

Finding a Physical Therapist

Physical therapists typically work in hospitals, private practices, fitness centers, and rehabilitation and research facilities. Ask your doctor for recommendations, contact your medical insurance provider, or check out the American Physical Therapy Association’s website to find physical therapists in your area.

If you’ve seen a dentist or been treated for a broken bone, you’ve experienced radiation firsthand. In everyday life, radiation in the form of X-rays is used to create images of areas of the body that doctors can’t see, such as the inside of a tooth or the interior of the chest cavity.

In much higher doses, radiation is used to treat cancer. Radiation therapy (also called radiotherapy, irradiation, or X-ray therapy) works by preventing cells from growing or reproducing, and by destroying them. But parents whose kids need radiation therapy — one of the most common treatments for childhood cancer — often have many questions and concerns about it.

About Radiation Therapy

In radiation therapy, high-energy radiation from X-rays, gamma rays, or fast-moving subatomic particles (called particle or proton beam therapy) is used to kill cancer cells and shrink tumors. Types of childhood cancer treated with radiation therapy include brain tumors, Wilms tumor, and head and neck cancers.

But besides destroying cancer cells, radiation therapy also can harm normal cells. Normal cells are more likely to recover from its effects, though, and the health care team will take extensive measures to carefully monitor a child’s radiation doses to protect healthy tissue.

Because every case is different, each child’s cancer treatment is unique. Some kids receive radiation therapy alone, while others need both radiation and chemotherapy (the use of medicines to destroy cancer cells). And some kids require radiation therapy and surgery to remove tumors or cancerous areas.

How Radiation Is Given

Radiation therapy is administered two ways: externally or internally. Some kids may receive both external and internal radiation, depending on their needs.

External radiation therapy uses a large machine and special equipment that aims very specific amounts of radiation at cancerous tumors or diseased areas of the body. With internal radiation therapy (also known as brachytherapy, interstitial therapy, or implant therapy), a radioactive substance is injected or implanted into the body at the site of the tumor or cancer cells. In some cases, the material is swallowed.

Most kids receive only external radiation therapy, although those with cancers of the head and neck, uterus, cervix, thyroid, and testes may also undergo internal radiation therapy.

Other forms of radiation therapy can target cancer cells even better. One type is called intra-operative radiation therapy. After surgery, small amounts of cancerous cells can still remain in a child’s body. So, while the child is still in the operating room and the cancerous area is exposed, doctors use special machines to give a dose of radiation before the area is stitched closed. Another type, proton-beam radiation therapy, better focuses the radiation on the cancerous tissue with the goal of causing less harm to the surrounding healthy tissue.

A radiation oncologist (a doctor who specializes in radiation therapy) will work with other health care professionals to decide on the type and dose of radiation therapy that’s best for a child.

What Happens During External Radiation Therapy

Receiving radiation therapy for cancer treatment isn’t a one-time deal: Kids usually visit the hospital or treatment center as outpatients 4 to 5 days a week for several weeks, coming in just for the treatment and going home right after. Receiving small daily doses of radiation helps to protect the normal cells from damage, while weekend breaks help them recover from the trauma of radiation.

Before the first radiation treatment, a planning session called simulation will help a family prepare. The child will lie on an X-ray table while a radiation therapist uses an X-ray machine (called a simulator) to define the treatment area. Some X-rays or CT scans might be taken, and an area on the skin is marked with ink to highlight the treatment area. This “tattoo” should not be wiped off because it helps to position the radiation for each treatment.

At each external radiation appointment, the child will wear a hospital gown or robe and enter the radiation treatment room, where the radiation therapist will settle the child into position. The therapist will leave, and a large machine will then deliver the exact amount of radiation needed to kill the cells in the cancerous area. Most of the time that a child spends on the radiation treatment table involves proper positioning — the treatment itself takes only minutes.

Younger kids may have trouble being still during treatment — in these cases, kids may wear a custom body cast or be sedated to help immobilize them. To prevent unnecessary radiation exposure, parents aren’t allowed in the treatment room, but can still be there for their child during therapy. Some hospitals have two-way communication devices so mom or dad can talk with and reassure their child, and some even use closed-circuit TVs that allow parents to watch the procedure.

What Happens During Internal Radiation Therapy

Internal radiation treatment usually requires a child to stay in the hospital for several days for careful monitoring. The radioactive material may be in small tubes that are put into the cancerous tumor or a body cavity, or swallowed or injected into the bloodstream. This can require a minor surgical procedure and anesthesia (for example, when inserting something into the uterus, esophagus, or airways).

Parents may wonder whether the radiation their child receives will rub off on them or other family members — and whether they can touch, hug, and care for their child during and after treatment. If the treatment is external radiation therapy, there’s no need to worry. Kids getting external radiation are not radioactive after treatment, so contact with family members does not need to be restricted.

Kids and teens receiving internal radiation therapy, though, may have some restrictions. The radiation in the implant may send high-energy rays outside the patient’s body, so visitors must be protected from exposure. The child will be in a private room, and nurses and visitors can enter only for short periods of time. The child will have all the necessary care, but the nurses will work quickly to reduce exposure.

Common Side Effects of Radiation

If your child has cancer, you’re not only coming to terms with that diagnosis, but probably also worrying about the physical and emotional effects of radiation therapy.

Although the main purpose of radiation is to destroy cancer cells, it also can damage healthy cells. It’s this damage to normal cells that causes radiation side effects, most of which are related to the area being treated. The physical side effects of radiation therapy depend on the dose of radiation, the location where it was received, and whether the radiation was internal or external.

Many patients have no side effects at all. For those who do, most will go away in time, generally aren’t serious, and can be controlled with proper treatment.

A child who receives radiation therapy may experience side effects shortly after beginning treatment (called early side effects), such as:

Fatigue

One of the most common side effects of radiation treatment, both during treatment and after, fatigue (tiredness) often begins within a few weeks of the start of treatment and lasts for 4 to 6 weeks after it’s completed. Encourage your child to rest and sleep as often as possible, even if it doesn’t immediately result in more energy. In the long run, rest helps the body recover from radiation treatment.

Skin Damage or Changes

Skin damage is another very common side effect of radiation treatment, but only in the area receiving the radiation dose. This area may be red, sensitive, or easily irritated in the days, weeks, and months during and after treatment. The skin may swell or droop or the texture may change. The doctor might prescribe ointments or cream to speed healing and reduce irritation, which should go away 2 to 3 weeks after treatment ends.

Also, this skin may be more sensitive to sun exposure for months after treatment. There also might be some permanent changes to the color and elasticity of the skin.

How can you help? Dress your child in loose-fitting, soft clothes (such as cotton fabrics) to avoid skin irritation in the treatment area. It’s also important to protect the delicate skin from sunlight. During treatment, the irradiated skin should not be exposed to sunlight. After treatment, you should always apply a sunscreen with a sun protection factor (SPF) of at least 30 on the affected area.

When it comes to skin care, gentleness is key. Be careful not to irritate the treated skin, and wash it gently with only lukewarm water and mild soap. Avoid rubbing and scrubbing; simply pat the skin dry after bathing. Discourage your child from scratching the area. Also avoid applying any powders, creams, or lotions to the treated area.

Common Side Effects of Radiation (continued)

Hair Loss

Radiation therapy to the head and neck may cause hair thinning or hair loss shortly after treatment begins. It’s important to remember, though, that radiation anywhere else but the head and neck will not cause the hair on the head to fall out.

Losing hair can be scary for kids, especially if they’re at an age where it’s hard to be different. Getting a shorter haircut might make it less upsetting for a child once hair loss starts. Kids also may feel more comfortable wearing hats, bandannas, baseball caps, scarves, or wigs until the hair grows back — which may happen within 3 months after treatment ends. Although hair loss usually is temporary, it can be permanent.

Sore Mouth and Tooth Decay

The tissues of the mouth may be sore and sensitive and there may be an increased risk of tooth decay if a child received radiation therapy to the head and neck. These side effects usually happen during the second or third week after therapy begins and disappear within a month or so after it ends. The doctor may prescribe a mouth rinse to reduce pain and irritation. Kids should go for regular dental checkups and follow the dentist’s advice during radiation therapy.

Gastrointestinal Problems

In the hours following treatment, kids may have gastrointestinal problems (such as loss of appetite, diarrhea, nausea, and vomiting) if they received radiation treatment to the pelvis or abdomen. Some who receive radiation therapy to the head and neck also may have nausea and vomiting.

Even if your child doesn’t feel like eating, it’s still important to try to make sure he or she gets good nutrition. Offer foods high in nutrients and talk to your doctor about medicines or dietary changes that may ease stomach upset and prevent weight loss. Eating small meals throughout the day rather than several larger ones may be easier for your child, and bland foods (such as crackers, broth, and rice) can be easier to digest.

Blood Changes

Radiation therapy may cause low levels of platelets, red blood cells, and white blood cells (the cells that prevent bleeding and help the body fight infection). The doctor will monitor your child’s blood counts regularly and prescribe medicine or transfusions if needed.

Long-Term Side Effects

Some kids who have radiation therapy also have long-term or chronic side effects that can occur months to years after the treatment. These late effects — which can be temporary but usually are permanent — can include problems with bone growth, fertility, skin changes, and new tumor development, depending on where the radiation was received, the age of the child, and the dose given. Radiation on the brain may affect learning and memory.

Your doctor can offer advice and may prescribe medications to make your child more comfortable during radiation treatment. Make sure you avoid giving your child any medicines, including herbal medicines or over-the-counter (OTC) drugs, without the doctor’s OK.

Caring for Your Child

Its side effects can be unpleasant, but radiation therapy itself is painless and causes no discomfort. To ease your child’s fears before treatment, it may help to take a tour of the radiation department to see the radiation technologists and equipment.

When your child asks questions about cancer or treatment, be honest. Use age-appropriate terms and encourage your child to share his or her feelings. And remember that you’re not alone: Doctors, nurses, psychiatrists, psychologists, social workers, child-life therapists, and other members of the cancer treatment team are there to reassure you and your child before, during, and after radiation therapy.

Once radiation treatment is done, it’s still important for the doctor to monitor your child’s health and progress in follow-up appointments. During these checkups, the doctor will ask if there are continuing side effects or any signs of the cancer returning.

Coping with childhood cancer can be frightening for kids and parents alike, but remember that many kids treated with radiation therapy go on to live healthy, full lives.

Don’t hesitate to discuss your questions and concerns with the doctor. The more you know about how radiation therapy will affect and help your child, the better prepared you’ll be.

In a recent parent-teacher conference, maybe the teacher expressed concern that your child could have a problem with certain speech or language skills. Or perhaps while talking to your child, you noticed an occasional stutter.

Could your child have a problem? And if so, what should you do?

It’s wise to intervene quickly. An evaluation by a certified speech-language pathologist can help find out if your child is having problems. Speech-language therapy is the treatment for most kids with speech and/or language disorders.

Speech Disorders, Language Disorders, and Feeding Disorders

A speech disorder refers to a problem with the actual production of sounds. A language disorder refers to a problem understanding or putting words together to communicate ideas.

Speech disorders include:

• Articulation disorders: difficulties producing sounds in syllables or saying words incorrectly to the point that listeners can’t understand what’s being said.
• Fluency disorders: problems such as stuttering, in which the flow of speech is interrupted by abnormal stoppages, partial-word repetitions (“b-b-boy”), or prolonging sounds and syllables (sssssnake).
• Resonance or voice disorders: problems with the pitch, volume, or quality of the voice that distract listeners from what’s being said. These types of disorders may also cause pain or discomfort for a child when speaking.

Language disorders can be either receptive or expressive:

• Receptive disorders: difficulties understanding or processing language.
• Expressive disorders: difficulty putting words together, limited vocabulary, or inability to use language in a socially appropriate way.
• Cognitive-communication disorders: difficulty with communication skills that involve memory, attention, perception, organization, regulation, and problem solving.

Dysphagia/oral feeding disorders are disorders in the way someone eats or drinks, including problems with chewing, swallowing, coughing, gagging, and refusing foods.

Specialists in Speech-Language Therapy

Speech-language pathologists (SLPs), often informally known as speech therapists, are professionals educated in the study of human communication, its development, and its disorders. They hold at least a master’s degree and state certification/licensure in the field, and a certificate of clinical competency from the American Speech-Language-Hearing Association (ASHA).

SLPs assess speech, language, cognitive-communication, and oral/feeding/swallowing skills to identify types of communication problems (articulation; fluency; voice; receptive and expressive language disorders, etc.) and the best way to treat them.

Remediation

In speech-language therapy, an SLP will work with a child one-on-one, in a small group, or directly in a classroom to overcome difficulties involved with a specific disorder.

Therapists use a variety of strategies, including:

• Language intervention activities: The SLP will interact with a child by playing and talking, using pictures, books, objects, or ongoing events to stimulate language development. The therapist may also model correct vocabulary and grammar and use repetition exercises to build language skills.
• Articulation therapy: Articulation, or sound production, exercises involve having the therapist model correct sounds and syllables in words and sentences for a child, often during play activities. The level of play is age-appropriate and related to the child’s specific needs. The SLP will physically show the child how to make certain sounds, such as the “r” sound, and may demonstrate how to move the tongue to produce specific sounds.
• Oral-motor/feeding and swallowing therapy: The SLP may use a variety of oral exercises — including facial massage and various tongue, lip, and jaw exercises — to strengthen the muscles of the mouth for eating, drinking, and swallowing. The SLP may also introduce different food textures and temperatures to increase a child’s oral awareness during eating and swallowing.

When Is Therapy Needed?

Kids might need speech-language therapy for a variety of reasons, including, but not limited to:

• hearing impairments
• cognitive (intellectual, thinking) or other developmental delays
• weak oral muscles
• chronic hoarseness
• birth defects such as cleft lip or cleft palate
• autism
• motor planning problems
• articulation problems
• fluency disorders
• respiratory problems (breathing disorders)
• feeding and swallowing disorders
• traumatic brain injury

Therapy should begin as soon as possible. Children enrolled in therapy early (before they’re 5 years old) tend to have better outcomes than those who begin therapy later.

This does not mean that older kids can’t make progress in therapy; they may progress at a slower rate because they often have learned patterns that need to be changed.

Finding a Therapist

It’s important to make sure that the speech-language therapist is certified by ASHA. That certification means the SLP has at least a master’s degree in the field and has passed a national examination and successfully completed an ASHA-accredited supervised clinical fellowship.

Sometimes, speech assistants (who usually have a 2-year associate’s or 4-year bachelor’s degree) may assist with speech-language services under the supervision of ASHA-certified SLPs. Your child’s SLP should be licensed in your state and have experience working with kids and your child’s specific disorder.

You might find a specialist by asking your child’s doctor or teacher for a referral or by checking local directories online or in your telephone book. State associations for speech-language pathology and audiology also maintain listings of licensed and certified therapists.

Helping Your Child

Speech-language experts agree that parental involvement is crucial to the success of a child’s progress in speech or language therapy.

Parents are an extremely important part of their child’s therapy program and help determine whether it is a success. Kids who complete the program quickest and with the longest-lasting results are those whose parents have been involved.

Ask the therapist for suggestions on how you can help your child. For instance, it’s important to help your child do the at-home stimulation activities that the SLP suggests to ensure continued progress and carry-over of newly learned skills.

The process of overcoming a speech or language disorder can take some time and effort, so it’s important that all family members be patient and understanding with the child.

Spina bifida is a birth defect that happens when a baby’s backbone (spine) does not form normally. As a result, the spinal cord and the nerves that branch out of it may be damaged.

The term spina bifida comes from Latin and literally means “split” or “open” spine. This defect happens at the end of the first month of pregnancy, when a baby’s spine and spinal cord (a bundle of nerves that runs down the center of the spine) are developing.

Sometimes, the defect causes an opening in the back, which is visible. The spinal cord and its coverings sometimes push through this opening. Other times, there is no opening and the defect remains hidden under the skin.

Depending on the severity of the defect and where it is on the spine, symptoms vary. Mild defects may cause few or no problems, while more severe defects can cause serious problems, including weakness, loss of bladder control, or paralysis.

Children with an exposed opening on the back will need surgery to close it.

Causes

Low levels of the vitamin folic acid during pregnancy are linked to spina bifida. Folic acid plays a large role in cell growth and development, as well as tissue formation. Not having enough folic acid in the diet before and during early pregnancy can increase a woman’s risk of spina bifida and other neural tube defects.

The causes of spina bifida in pregnancies where mothers took prenatal vitamins and got enough folic acid are largely unknown. Some evidence suggests that genes may play a role, but most babies born with spina bifida have no family history of the condition.

A high fever during pregnancy may increase a woman’s chances of having a baby with spina bifida. Women with epilepsy who have taken the drug valproic acid to control seizures also are at an increased risk of having a baby with spina bifida.

Types of Spina Bifida

The two forms of spina bifida are spina bifida occulta and spina bifida aperta:

1. Spina bifida occulta is the mildest form of the condition and can go unnoticed. “Occulta” means “hidden” in Latin, which in this case means that the defect is covered by skin. The spinal cord does not stick out through the skin, although the skin over the lower spine may have a patch of hair, a birthmark, or a dimple above the groove between the buttocks. Inside, the cord may be tethered (attached) to surrounding tissue instead of floating loosely in the spinal column.

   Most babies born with spina bifida occulta do not have long-term health problems.

2. Spina bifida aperta (“aperta” means “open” in Latin) includes two types of spina bifida:
   1. Meningocele (meh-NIN-guh-seel) involves the meninges, the membranes that cover and protect the brain and spinal cord. If the meninges push through the hole in the skull or the vertebrae (the small, ring-like bones that make up the spinal column), it creates a fluid-filled sac called a meningocele. This sac is visible on a baby’s head, neck, or back. The sac can be as small as a grape or as large as a grapefruit, and usually is covered by a thin layer of skin. Meningoceles can happen anywhere along the spinal column or at the base of the skull.

      Babies with this condition can have health problems if the nerves around the spine are damaged. For example, if the nerves that control the release of the bowels or bladder are affected, it may be difficult for a child to control these body functions. They also might have trouble moving certain muscles (paralysis). The degree of paralysis depends on where the meningocele is in the spine. The higher the opening is on the back, the more severe the paralysis can be.

   2. Myelomeningocele (my-uh-low-meh-NIN-guh-seel) is the most severe form of spina bifida. It happens when both the meninges and the bottom end of the spinal cord push through the hole in the spine, forming a large fluid-filled sac that bulges out of a baby’s back. Sometimes the sac bursts during childbirth and the spine and nerves are exposed at birth.

      A baby with this type of spina bifida usually has some paralysis, and muscle or bone problems as a result of the paralysis. This is due to the abnormal development of nerves in the spine, or to nerves being stretched as a result of the defect.

      It’s also common for babies to have hydrocephalus, a buildup of cerebrospinal fluid in and around the brain. This causes the baby to have an enlarged head or bulging soft spot at birth, which is the result of too much fluid and pressure inside the skull.

Diagnosis

Expectant parents may be able to find out if a baby has spina bifida by taking certain prenatal tests.

The alpha-fetoprotein (AFP) test is a blood test done between the 16th and 18th weeks of pregnancy. This test measures how much AFP, which the fetus produces, has passed in the mother’s bloodstream. If the amount is high, a repeat test may be done to make sure that the result is correct. If the second result is high, it could mean that a baby has spina bifida. In this case, other tests will be done to double-check and confirm the diagnosis.

In most cases of spina bifida aperta, doctors can see the defect on a prenatal ultrasound. Amniocentesis also can help determine whether a baby has spina bifida. A needle is inserted through the mother’s belly and into the uterus to collect fluid that is tested for AFP.

Usually, spina bifida occulta is not found until after a baby is born. To diagnose the condition in these cases, doctors may do an ultrasound on younger babies (less than 3 months old). For older babies, and to confirm results in younger babies, doctors may rely on a magnetic resonance imaging (MRI) scan or computed tomography (CT) scan.

Treatment

Treatment for spina bifida depends on its severity. Because spina bifida can involve many different body systems, like the nervous and skeletal systems, children may need support from a team of medical professionals. This team may include doctors (such as neurosurgeons, urologists, and orthopedic surgeons), physical and occupational therapists, and social workers.

Babies with spina bifida occulta might not need any treatment, unless their spinal cord is tethered. Tethering can lead to problems later in life (during growth spurts) so it’s necessary to surgically detach the spinal cord from surrounding tissue. After surgery, babies usually have no long-term health problems, but may need surgery again later in childhood if the spinal cord reattaches.

Babies with a meningocele need surgery to push the meninges back into the body and close the hole in the vertebrae or skull. This is usually done in the first few months of life.

Babies with a myelomeningocele need surgery 1 to 2 days after birth to protect the exposed area and central nervous system, and to prevent these areas from becoming infected. If a myelomeningocele is detected early enough during a woman’s pregnancy, the fetus can be operated on to correct the defect during the 25th week of pregnancy. During surgery, doctors detach the spinal cord from the skin, push the spinal cord back into place, and close the opening.

Babies who have hydrocephalus also need surgery to ease the buildup of fluid around the brain. This may require an endoscopic third ventriculostomy procedure or a shunt procedure:

• In a ventriculostomy, a small opening is made in the bottom of the third ventricle (one of four ventricles in the brain) to allow fluid to exit the brain.
• In a shunt procedure, a thin tube is placed within the brain to drain extra fluid down to the belly, where the body can absorb it.

Outlook

After recovery from surgery, babies born with a meningocele or myelomeningocele may need long-term care to help treat any underlying conditions that result from their spina bifida. Those with paralysis may eventually need walking aids like leg braces, walkers, or a wheelchair. Children with myelomeningocele who also have hydrocephalus will need the continuing care of a neurosurgeon, and they may have learning difficulties in school that require special services.

With the right medical care, kids can go on to lead normal, active lives. The goal is to create a lifestyle for them and their families in which their disability interferes as little as possible with normal everyday activities.

Prevention

Many cases of spina bifida can be prevented if women of childbearing age take 0.4 milligrams (400 micrograms) of folic acid every day before pregnancy and continue to take it throughout the first trimester. Some women may have to take more folic acid, especially if they are taking the medicine valproic acid for epilepsy or depression.

Because many women don’t find out that they’re pregnant until 4 to 5 weeks into the pregnancy, it is important to start taking folic acid before becoming pregnant. This provides the best protection for an unborn baby. Good sources of folic acid include eggs, orange juice, and dark green leafy vegetables. Many multivitamins contain the recommended dose of folic acid, too.

When most parents think of the juggling act involved in raising a family, they think of coordinating soccer games with ballet practice and grocery shopping.

But if you’re a parent of a child who is sick or has special needs, your schedule likely involves doctor’s visits, therapy sessions, and waiting for doctors and insurance companies to return your phone calls. And then there’s the exhaustion and endless worry.

What you need is help. But how can you get it? Here are six suggestions for making your life a little less complicated.

1. Accept help from friends and family. Everyone’s busy and that makes it hard to ask for or accept help. For some, it’s difficult to let your kids or partner help because they may not do things the same way you do them. Or maybe letting other people know you feel stressed or overwhelmed is just not your style. After all, parents are expected to be good at multitasking and juggling their kids’ and their own needs.

   If you feel exhausted and angry and have accepted that you need help, asking for it is the next step. Turning to others isn’t a sign of a weakness but rather one of strength. Recharging your batteries once in a while can help you be a better parent, partner, and person.

2. Be honest about what you need. By letting people know how hard your situation is, you’re allowing them entry into your world. When you say, “Going to the hospital by myself is hard,” you’re giving a friend a chance to say, “Let me come with you.” When you say it’s sometimes hard to get dinner on the table, your loved one knows that delivery of a warm meal will be greatly appreciated.
3. Create a list of needs. How many times have you heard someone say, “Let me know if I can do anything.” And how many times have you said, “I will” — and then didn’t? People want to help but they don’t know how. Make a list of the things that would make your life easier. Then, match the task with the friend who’d have the easiest time helping you out.

   Do you need help picking up your other kids from school? Ask a neighbor who is already picking up his or her own kids. Ask grandparents and siblings to do things they enjoy, whether it’s watching your child to give you a break or cooking freezer-ready meals.

   In this day and age, social media can ease the burden of asking. Post your needs on your personal social media page or register on one of the many caregiver websites that allow you to create a list of your needs (for example, dinner twice a week, the lawn mowed weekly, a companion for hospital visits) so friends can sign up for duties that best fit their skills and schedules.

4. Enlist other caregivers. Parents of children with special needs often feel that they are the only ones who can handle their child’s care. This is certainly true to an extent but that doesn’t mean that you can’t get away for a few hours every now and then. By leaving your child with a trusted sitter or family member you are teaching your child to handle change. Your child will develop the resilience and adaptability that every kid deserves to learn, regardless of overall health.

   To ensure the person helping you is up to the task, consider caregiver training. Many hospitals and state social service agencies provide classes for siblings, parents, grandparents, teachers, and babysitters.

5. Consider home health care. Some insurance companies will cover the cost of an in-home health aide or visiting nurse for a few hours a week if your child’s medical problems are chronic or severe. Call your benefits provider to see if you are eligible. Respite services are also available for children with developmental disorders, including autism. These services can include a caregiver coming to your home to give you a break for a few hours or overnight, or a drop-off program in the community.
6. Seek companionship. Seeking help doesn’t always mean asking someone to do something. Often what a caregiver needs most is to maintain contact with friends and family. That can be hard, however, when your kids need you close by. So ask a friend to come over after the kids go to bed. Talk over a pot of coffee, share a meal, or watch a movie. Take time to connect and laugh with others and free yourself from your usual worries. Support groups, both online and in-person, can be helpful, too.

The burden shouldn’t be on you to make it easier for someone to help you. You have enough on your plate. Besides, most people want to help. If you let your friends or family know what you need, they will know how to help you and feel less burdened — and that’s not just good for you, but for your whole family.

If your child has a serious illness, the caretaking that falls to you is undoubtedly intense. But of course you do it willingly. After all, you’d do anything for your child, including switching places in a minute if only that were possible.

Instead you give all that you can, in every other imaginable way. It’s harder than anything you’ve ever done, and honestly, there are moments when the sheer magnitude of what you’re up against is so overwhelming that you just want to run and hide.

Ask any parent who’s done this before and you’ll find out something very important: You’re not alone.

The Caregiver’s Dilemma

When you’re the caregiver of a child who is seriously ill, it can feel as if the whole world is on your shoulders. Your sick child needs you. You may have other children who need you. Your spouse needs you. Your job — however pointless work might seem right now — needs you.

Yet there’s only so much you can give before you will feel mentally, emotionally, and physically drained. That’s why it’s a necessity — not a luxury — to spend some time taking care of yourself so that you can recharge and feel empowered to continue to support and care for your child.

Tips for Caregivers

Many of these tips might seem easier said than done at first, and a few may seem downright frivolous. But to make it through the long haul, consider the wisdom of that air-safety rule about putting your own oxygen mask on first before helping others. Here are some ways to do that:

Take breaks. It’s essential to regularly schedule a few times each week — even for just an hour or two — when you can get away while a family member, friend, or a health aide stays with your child. Once away, that time is yours, so don’t feel guilty about how you spend it. Nap, read, have coffee with a friend, go shopping, whatever allows you to relax. While you’re out, your child will probably enjoy having someone else to talk to and you’ll feel refreshed when you get back.

Eat right. It’s no surprise that living on coffee and picking at hospital leftovers can leave you feeling tired and run down. If you know you’re going to be out, carry nutritious snacks with you, like fruit, granola bars, sandwiches, or nuts. And if friends offer to bring homemade meals to your home to help out, take them up on it.

Exercise. Whether through a brisk walk, a bike ride, or yoga, most people find that exercise helps clear the mind, boost energy levels, and improve sleep. Even 20 minutes can do the trick, so save a bit of time every day to get moving.

More Tips

Stay organized. Keep all the information you’ve accumulated about your child’s illness in one place, including medication schedules, important phone numbers, and insurance information. When you think of questions for your doctor, write them down immediately so you won’t forget. And since dealing with insurance companies can often seem like a full-time job in itself, enlist the help of your spouse or another trusted family member or friend to help keep it all straight. Use a notebook to keep all of the information in one place.

Ask for help. Your friends and family likely want to help you, but might not be sure about what you need. If someone says, “If there’s anything I can do…” — and there is — say so. You’d be surprised at how running an errand, doing some laundry, or just sitting and listening to you talk about the day can not only benefit you, but also can make a loved one feel useful.

Find a support group. Ask your child’s doctor, nurse, or social worker for information on local support groups related to your child’s condition or caregiving in general. If you feel more comfortable sharing anonymously online, then look there. The important thing is to get beyond the feeling of isolation by reaching out to others who’ve been in your shoes.

Acknowledge your feelings. Your child is sick — of course you have feelings of anger and frustration, and days when you wish you didn’t have to deal with it all. Does this make you a bad parent? No, it makes you human. Accept these negative feelings and the often painful fact that no matter how much time or energy you invest in your child’s care, you can never be completely in control of your child’s health and happiness.

Be aware of the signs of “caregiver burnout.” Caregiver burnout is a true state of exhaustion, both physical and emotional. It tends to happen when caregivers try to “do it all” without getting the help or rest they need.

Because caregivers tend to be on autopilot, they’re not usually quick to recognize burnout in themselves. Other people might notice the symptoms first, which can include changes in appetite and sleep patterns, withdrawal from social activities, increased anxiety, or emotions that are either heightened (such as excessive crying or irritability) or decreased (feeling empty or unconcerned). Take it seriously if someone you trust notices any of these things in you.

Getting Help

If you feel like you may be experiencing caregiver burnout, depression, or anxiety, explain your feelings and symptoms to your doctor, who may recommend that you see a counselor or therapist (especially one who specializes in caregiver needs).

Your doctor also may encourage you to take a temporary break from your duties by looking into respite care (the kind needed would depend on how ill your child is). Medications for anxiety or depression could be an option, too.

Finally, remember that you are not superhuman. You’re a parent doing your best. So give your child your time, your encouragement, your attention, and your unconditional love. Just be sure to save a little bit for yourself.

If your child has a birth defect, you might be feeling overwhelmed and unprepared. But you’re not alone — about 120,000 babies are born in the United States each year with birth defects, according to the Centers for Disease Control and Prevention (CDC).

It’s important to know that many people and resources are available to help you and your child.

What Are Birth Defects?

Birth defects (also called congenital anomalies) are problems present at birth. There are many different types of birth defects, and they can range from mild to severe. Defects can be structural (like a cleft lip/palate, spina bifida, or a heart defect) or functional/developmental (like Down syndrome, deafness, or a metabolic disorder like phenylketonuria).

Some defects are inherited (passed on to a baby by his/her parents), while others have environmental causes. In many cases, the cause is unknown.

Steps to Take

As the parent of a child with a birth defect, it’s important for you to:

Acknowledge your emotions. You might feel shock, denial, grief, and even anger. Accept those feelings, and talk about them with your spouse/partner and other family members. You also might consider seeing a counselor. Your doctor probably can recommend a social worker or psychologist.

Get support. Talking with someone who’s been through the same thing can help. Ask your doctor or a social worker if other parents in the area have children with the same condition. Consider joining a support group — ask the doctors or specialists for advice on finding a local or national support group, or search online.

Celebrate your child. Let yourself enjoy your baby the same way any new parent would — by cuddling and playing, watching for developmental milestones (even if they’re different from those in children without a birth defect), and sharing your joy with family members and friends. Many parents of babies with birth defects wonder if they should send out birth announcements. This is a personal decision — the fact that your baby has a health problem doesn’t mean you shouldn’t be excited about the new addition to your family.

Getting Help and Information

Educate yourself. Try to learn as much as you can as soon as you can. Start by asking your doctors lots of questions. Record the answers, and if you’re not satisfied — or if a doctor doesn’t answer your questions thoroughly — don’t be afraid to get second opinions.

Other places to get information include:

• books written for parents of children with birth defects
• national organizations such as the March of Dimes, the National Information Center for Children and Youth With Disabilities, and those representing a specific birth defect
• support groups or other parents

Keep a file with a running list of questions and the answers you find, as well as suggestions for further reading and any materials your child’s doctor gives you. Keep an updated list of all health care providers and their phone numbers, as well as emergency numbers.

Explore options for paying for treatment and ongoing care for your child. There can be extra medical and therapeutic costs in caring for a child with a birth defect. Besides health insurance, other available resources include nonprofit disability organizations, private foundations, Medicaid, and state and local programs. A social worker can help you learn more about these.

Seek early intervention. Early intervention means bringing a team of experts together to assess a child’s needs and create a treatment program. Early intervention services can include feeding support, assistive technology (tools, devices, and aids that make everyday tasks easier for people with disabilities), occupational therapy, physical therapy, speech therapy, nutrition services, and social work services.

Besides identifying, evaluating, and treating your child’s needs, early intervention programs:

• tell you where you can get information about the disability
• help you to learn how to care for your child at home
• help you find payment options and tell you where you can find free services
• help you make important decisions about your child’s care
• provide counseling

Your child’s doctor or a social worker at the hospital where you gave birth should be able to connect you with the early intervention program in your area.

Work as a team. Most children with birth defects need a team of professionals to treat them. Even if your child needs to see only one specialist, that person will coordinate care with your primary care provider. Some hospitals have teams ready to deal with problems such as heart defects, cleft lip and palate, or cerebral palsy. Still, you may find yourself being both the main contact between different care providers and the coordinator of your child’s appointments. As soon as possible, get to know the different team members. Make sure they know who else will be caring for your child and that you intend to play a key role.

Birth Defects in the Future

Research continues into the causes of birth defects and ways to detect, prevent, and treat them. Technology plays a big part — for example, prenatal testing has gotten better and more precise.

Safer and more accurate tests include:

• ultrasound tests and magnetic resonance imaging (MRI)
• cell-free DNA screening, which involves taking a blood sample from the mother and testing it for the genetic makeup of the baby. This test helps doctors identify any abnormal chromosomes in the baby, which can cause problems like Down syndrome and Turner syndrome.
• amniocentesis and chorionic villi sampling. Amniocentesis involves removing a small amount of amniotic fluid from around the developing fetus. This fluid can be tested to check for genetic problems. Chorionic villi sampling involves removing a small piece of the placenta to check for genetic problems.
• preconception counseling can help couples understand any risks for having a baby with a birth defect before they try to become pregnant.

None of these tests can prevent birth defects, but they give a clearer, safer, and more accurate diagnosis at an earlier stage of pregnancy — giving parents more time to seek advice and consider their options.

Genetics research is advancing quickly. The Human Genome Project has identified most of the genes in the human body, but researchers are still working on understanding what the genes do. Many gene mutations that lead to a high risk for birth defects have been identified.

Early surgery is an option in the treatment of certain birth defects — and sometimes can take place even before a baby is born. Surgeons now can operate on fetuses to repair structural defects, such as hernias of the diaphragm, spina bifida, and lung problems. These procedures can be controversial, though, because they sometimes cause premature labor. And it’s still not clear whether they always can improve a child’s outcome.

To get information on specific research about your child’s disability, contact the national organization for that disability. Also, the March of Dimes, the National Information Center for Children and Youth With Disabilities, and the National Organization for Rare Disorders, Inc. (NORD), may have information about the latest research.

New parents eagerly look forward to bringing their baby home, so it can be frightening if your newborn needs to be admitted to the neonatal intensive care unit (NICU). At first it may seem like a foreign place, but understanding the NICU and what goes on there can help ease your fears and let you better help your baby.

About the NICU

If your baby is sent to the NICU, your first question probably will be: What is this place? With equipment designed for infants and medical staff specially trained in newborn care, the NICU is an intensive care unit created for sick newborns who need specialized treatment.

Sometimes the NICU is also called:

• a special care nursery
• an intensive care nursery
• newborn intensive care

Babies who need to go to the unit are often admitted within the first 24 hours after birth. Babies may be sent to the NICU if:

• they’re born prematurely
• problems happen during their delivery
• they show signs of a health issue in the first few days of life

Only very young babies (or babies with a condition linked to being born prematurely) are treated in the NICU — they’re usually infants who haven’t gone home from the hospital yet after being born. How long they’ll stay in the unit depends on the severity of their condition.

Who Will Be Taking Care of My Baby?

Although many people help care for babies in the NICU, those most responsible for day-to-day care are nurses. You might come to know them very well and rely on them for information and reassurances about your baby.

The nurses you might interact with include a:

• charge nurse: the nurse in charge of the shift
• primary nurse: the one assigned to your baby
• neonatal nurse practitioner: someone with additional training in neonatology care

Other people who may help care for your baby include:

• a neonatologist: a doctor specializing in newborn intensive care who heads up the medical team
• neonatology fellows, medical residents, and medical students: all pursuing their training at different levels
• pediatric hospitalist: a pediatrician who works solely in the hospital setting
• various specialists: such as a neurologist, a cardiologist, or a surgeon to treat specific issues with the brain, heart, etc.
• a respiratory therapist: who helps administer treatments that help with breathing
• a speech-language pathologist: who helps babies with feeding or swallowing problems
• a nutritionist: who can determine what babies receiving IV nutrition need
• a physical therapist and/or occupational therapist: who work with feeding and movement issues with the infants and their parents
• a pharmacist: who helps manage a baby’s medications
• lab technicians: who process the laboratory tests (e.g., urine, blood) taken
• a chaplain: who can counsel you and provide comfort; chaplains may be interfaith or of a particular religious affiliation, but they’re there to support anyone looking for a spiritual/religious connection
• a social worker: who helps you get the services you need and also lends emotional support by connecting you to other families and therapists, if needed

Questions to Ask the Neonatologist or the Nurses

To better help you help your baby during a stay in intensive care, it’s wise to get as much information as possible about what to expect. If you have questions, talk to the neonatologist or the nurses.

The nurses see your baby every day, so they can give you frequent updates on your little one. The plan of care for your infant is discussed on “rounds” every day. Nurses can help you to understand the diagnosis and treatment plan, but it’s also helpful to discuss these issues with other members of the medical team, including:

• the attending neonatologist
• neonatal fellow
• neonatal nurse practitioner
• the residents who are caring for your baby

All of these health professionals are involved in deciding the best plan of care for your baby.

You might want to ask the neonatologist and other doctors and/or the nurses:

• How long will my baby be in the unit?
• What, specifically, is the problem?
• What will be involved in my baby’s treatment and daily care?
• What medicines will my baby have to take?
• What types of tests will be done?
• What can my baby eat and when?
• Will I be able to nurse or bottle-feed my baby — if so, when and how?
• Will someone help me learn how to nurse my baby?
• What can I do to help my baby?
• Will I be able to hold or touch my baby?
• How often and for how long can I stay in the unit? Can I sleep there?
• What sort of care will my baby need when we get home?
• Is there someone who can help us through the process?

You also may want to talk to the nurses in more detail about your baby’s daily care and what to expect when you spend time with your little one. Also, ask about the visiting schedule and any rules of the NICU so you’ll know which family members can see the baby and when.

Questions to Ask the Social Worker

You might want to ask the social worker:

• Where can we get food when we’re here?
• Can we eat in the NICU?
• Are cots or recliners available if we’re allowed to stay overnight? What about blankets and pillows?
• Is nearby temporary housing available (such as through a Ronald McDonald House)?
• If so, how do we get a room?
• Is the room free? If not, is the cost low and/or covered by our health insurance?
• Are computers with Internet access available for doing work or emailing friends and loved ones about our baby’s progress? Is wi-fi access available for smartphones and other devices?
• Can we use our cellphones in the NICU? If not, how can we be reached in the NICU?
• Are phones available in or around the NICU?
• Is there a support group or other parents of children in the NICU we can talk to?

What to Expect in the NICU

Walking into the NICU can feel like stepping onto another planet — the environment is probably unlike anything you’ve experienced. The unit is often busy, with lots of activity, people moving around, and beeping monitors.

Once settled in the unit, your baby will receive care tailored to your little one’s specific needs. Most NICU babies are on special feeding schedules, depending on their level of development or any problems they have. For instance, some infants are too premature or too sick to eat on their own, so they have a feeding tube that runs through the mouth and into the stomach. Others need high-calorie diets to help them grow.

Medications are another crucial part of NICU care — your child may take antibiotics, medicine to stimulate breathing, or something to help his or her blood pressure or heart rate, for example.

To ensure that your baby’s care stays on track, the doctors also will order various tests, possibly including periodic blood and urine tests, X-rays, and ultrasounds. For infants whose care is complicated and involved, the doctors or nurses will place a line into an artery or vein so they can draw blood without having to repeatedly stick the baby.

NICU staff try to make the infants’ stay in the nursery as comforting as possible for the infant as well as the families. The nurses can explain what all of the monitors, tubes, tests, and machines do, which will go a long way toward demystifying the NICU.

NICU Equipment

Here’s a brief look at what some of the unfamiliar equipment does and how it may help your baby, depending on your little one’s condition and diagnosis:

• Feeding tubes: Often, NICU babies cannot get as many calories as they need through regular feeding from a bottle, so the nurses will use a small feeding tube to deliver formula or breast milk (that the mother pumps). The tube is placed into the baby’s stomach through the mouth or through the nose.

  If an infant is able to take some milk from the bottle, the nurse will just give the rest through the feeding tube. Sometimes, the babies get all their nutrition through the feeding tube so that they don’t use excess energy trying to feed from the bottle.

  The feeding tubes shouldn’t be painful — they’re taped in place so they won’t move around and cause friction. However, if they’re in place for a long time they can cause erosions in the stomach or nose where they rub, so are changed routinely to avoid this.

• Infant warmers: These are beds with radiant heaters over them. Parents can touch their babies in the warmers, but it’s always a good idea to talk to the NICU staff about it at first, just in case.
• Isolettes: These are small beds enclosed by clear, hard plastic. The temperature of the isolette is controlled and closely monitored because premature infants frequently have difficulty maintaining their body temperature. Holes in the isolettes allow access to the infants so the nurses and doctors can examine the infants and parents can touch their babies.
• IVs and lines: An intravenous catheter (or IV) is a thin flexible tube inserted into the vein with a small needle. Once in the vein, the needle is removed, leaving just the soft plastic tubing.

  Almost all babies in the NICU have an IV for fluids and medications — usually in the hands or arms, but sometimes in the feet, legs, or even scalp. At first, the IV may be inserted in the baby’s umbilical cord. In the first hours after delivery, the umbilical cord provides a way for the doctors to insert arterial or venous lines without having to use a needle through the skin.

  Instead of giving your baby injections every few hours, IVs allow certain medications to be given continuously, several drops at a time. These are known as drips or infusions. Doctors may use these medications to help with heart function, blood pressure, or pain relief.

  Some situations require larger IVs to deliver greater volumes of fluids and medications. These special IVs are known as central lines because they’re inserted into the larger, more central veins of the chest, neck, or groin, as opposed to the hands and feet. They’re inserted by a specially trained pediatric surgeon.

  Arterial lines are very similar to IVs, but they’re placed in arteries, not veins, and are used to monitor blood pressure and oxygen levels in the blood (although some babies may simply have blood pressure cuffs instead).

• Monitors: Infants in the NICU are attached to monitors so the NICU staff are constantly aware of their vital signs. The nurses will often place the infants in positions that seem the most soothing, like on their tummies or on their sides.

  The single monitor (which picks up and displays all the necessary information in one place) is secured to your baby’s body with chest leads, which are small painless stickers connected to wires. The chest leads can count your child’s heart rate and breathing rate. A pulse oximetry (or pulse ox) machine also may display your baby’s blood oxygen levels on the monitor. Also painless, the pulse ox is taped to your baby’s fingers or toes like a small bandage and emits a soft red light.

  A temperature probe, a coated wire adhered to your baby’s skin with a patch, can track your little one’s temperature and display it on the monitor. And unless blood pressure is being directly monitored through an arterial line, your baby will usually have a blood pressure cuff in place.

• Phototherapy: Often, premature infants or those with infections also have jaundice (a common newborn condition in which the skin and whites of the eyes turn yellow). Phototherapy is used to help get rid of the bilirubin that causes jaundice. The infants might lie on a special light therapy blanket and have lights attached to their beds or isolettes. Usually, they only need phototherapy for a few days.
• Ventilators: Babies in the NICU sometimes need extra help to breathe. An infant is connected to the ventilator (or breathing machine) via an endotracheal tube (a plastic tube placed into the windpipe through the mouth or nose).

  Babies who’ve been in the NICU for a prolonged stay — months at a time — may have a tracheostomy (a plastic tube inserted directly into the trachea) that’s connected to the ventilator on the other end.

  There are many different kinds of ventilators — different situations call for different machines — but they all accomplish the same basic purpose: to help a baby breathe.

Bonding With Your Baby in the NICU

All the machines may seem overwhelming, but don’t let them keep you from interacting with your baby. Bonding with a baby in the NICU is as important as bonding with any newborn, sometimes even more so. You simply have to learn the best way to do it.

Parents can visit and spend time with their NICU babies. The number of people who can visit a baby in the NICU may be limited, but parents are usually allowed to stay most of the day (except when the medical team performs its daily examination and evaluation). Ask the NICU’s social worker about what accommodations are available for parents — cots, recliners, or nearby housing such as through the Ronald McDonald House Charities.

Other family members can visit only during specified hours and only a few at a time. And siblings may not be allowed in the NICU because children have a greater risk of passing on an infection. Check with the hospital staff about which family members can see your baby.

Depending on how sick your child is, you might be able to hold your little one even if he or she is on a ventilator or has an IV. If the doctors feel that would be too much for your baby, you can still hold his or her hand, stroke his or her head, and talk and sing to him or her. A gentle, consistent touch will be the most reassuring.

But for some very premature infants, touching is extremely stressful (if they were still in the womb, they would have little tactile stimulation). In these cases, doctors may suggest that you minimize physical contact but still spend as much time as possible with your baby. Check with the doctor or nurses to figure out how much and what type of contact is best.

A mother who can hold her baby might be able to breastfeed or pump milk and bottle-feed. Most NICUs have screens to allow mothers to breastfeed their babies at the bedside.

Kangaroo care (or skin-to-skin contact) is another option to help you forge a bond with your new baby. Here’s how it works:

• Place your baby (who’s usually dressed in just a diaper and a hat) on your chest underneath your shirt, so your little one is resting directly on your skin.
• Loosely close your shirt over your baby to help keep him or her warm.

Doctors and researchers have suggested that skin-to-skin contact can improve babies’ recovery time and help them leave the NICU sooner.

But the best way for parents to help their babies in the NICU is to be there for them and learn to read their behaviors. This will help you to figure out:

• when your baby is stressed and needs to rest
• when your baby is ready to bond with you
• what type of interaction your baby likes (stroking, singing, etc.)
• what time of day your baby is the most alert
• how long your baby can respond to you before getting tired

Although you want to interact with your infant, you also want to allow periods of undisturbed sleep. Let your baby set the pace for your time together and you’ll both get more out of it.

Other NICU Basics

Here are some basics to help make the NICU a little less mysterious:

Everyone who comes into the NICU must wash their hands when they enter. (There will be a sink and antibacterial soap in the room and near the entrance of the NICU.) This is a crucial part of keeping the NICU environment as clean as possible so the babies won’t be exposed to infections. Some units require visitors to wear hospital gowns, particularly if a child is in isolation. You may also need to wear gloves and a mask.

Ask the nurses what you’re allowed to bring into the unit — the risk of infection limits what you can leave with your baby. Some parents tape pictures to the isolette or decorate the incubator. If you want to give your child a stuffed toy, the staff may wrap it in plastic first.

When you’re in the NICU, keep noise and bright lights to a minimum. Try not to bang things on the isolette or infant warmer, talk in a loud voice, or slam doors. If you’re concerned about light, ask a nurse if you can drape a blanket partially over the isolette. Most important, let your baby sleep when he or she needs to.

Making the NICU Stay More Manageable

The time when your baby is in the NICU can be stressful — you may be away from your friends and family, including any other children you may have. Your life may seem like it’s been turned upside down as you wait for the day when your baby may be able to leave with you.

You may feel like you eat, sleep, and breathe the NICU 24 hours a day, 7 days a week. And you might feel especially confused and overwhelmed if your baby was unexpectedly born prematurely and/or if the NICU is located far away from your home and your usual support system.

As hard as it may be sometimes, it’s important to pay attention to your own needs and those of the rest of the family, particularly other kids. Make plans for a weekly family activity, and sit down together and talk about how this experience makes you feel. Doing something for yourself can be as simple as taking a relaxing bath, going for a walk, or reading a favorite book for an hour.

You also can turn to other parents in the NICU for comfort. They’ll likely know better than anyone what you’re feeling. Also be sure to talk to the NICU’s social worker about parents’ support groups, where you can share your feelings, worries, and triumphs together. The hospital’s chaplain also might be able to provide you with support and even a shoulder to cry on.

When you take care of yourself, you’ll be more rested and better prepared to take care of your baby. But that care doesn’t have to center on your infant’s illness. Enjoy your new baby, spend time together, and get to know your little one.

Your baby’s NICU stay can be difficult, but also rewarding as you watch your little one grow and progress day after day.

It can be stressful whenever kids are in the hospital — and even more so when they’re admitted to the pediatric intensive care unit (PICU). But a basic understanding of the people and equipment in the PICU can help you feel better prepared to help your child recover.

What’s the PICU?

The PICU is the section of the hospital that provides sick children with the highest level of medical care. It differs from other parts of the hospital, like the general medical floors, in that the PICU allows intensive nursing care and continuous monitoring of things like heart rate, breathing, and blood pressure.

The PICU also allows medical staff to provide therapies that might not be available in other parts of the hospital. Some of these more intensive therapies include ventilators (breathing machines) and certain medicines that can be given only under close medical supervision.

Who’s Sent to the PICU?

Any child who’s seriously ill and needs intensive care and whose medical needs can’t be met on the hospital’s main medical floors goes to the PICU.

Kids in the PICU might include those with severe breathing problems from asthma, serious infections, certain heart conditions, some complications of diabetes, or those involved in a serious automobile accident or near-drowning.

Some kids may have been stable enough to initially be cared for on the hospital’s medical-surgical floors, but may be transferred to the PICU if they become more acutely ill. Following major surgery, many children are cared for in the PICU for several days.

How long kids will be in the PICU depends on their condition — some might stay a single day; others might need to stay for weeks or even months. As always, ask the doctor or nurse caring for your child if you have questions.

Who Takes Care of Kids in the PICU?

The PICU has many highly skilled people who care for kids. But not knowing who everyone is and what they do can be confusing and a little overwhelming at first. Most people will introduce themselves and tell you how they’re involved in your child’s care, but if they don’t, feel free to ask. At all times, you should feel comfortable asking the doctors and nurses questions about your child and the care being given.

The nurses who work in the PICU are experienced in caring for the sickest children in the hospital. They’re the people most closely involved with the minute-to-minute care of the kids. The PICU also tends to have a higher nurse-to-patient ratio than other parts of the hospital (in other words, each nurse cares for fewer patients, which gives them more time with your child).

Numerous physicians may care for your child, but the attending physicians are in charge. Your child might be cared for by a pediatric intensivist, who is a doctor who did a 3-year residency in pediatrics after medical school, followed by 3 more years of subspecialty fellowship training in intensive care.

The PICU team may include residents (doctors who’ve completed medical school and are training to be pediatricians) and PICU fellows (pediatricians training to be attending intensivists).

Many other subspecialists, such as cardiologists (heart doctors) or neurosurgeons (brain surgeons), might be involved, depending on your child’s needs. Respiratory therapists are experienced with ventilators and other breathing equipment, and are often involved in the care of PICU patients with breathing problems. Also, physical therapists, occupational therapists, nutritionists, and pharmacists may play a role in your child’s care.

You also might meet social workers who help families cope with the emotional burdens of having a critically ill child. They can help to arrange temporary housing for families (through organizations like Ronald McDonald House), assist with insurance issues, or coordinate discharge planning when your child is ready to go home.

You may want to ask whether the hospital has child life specialists. Trained in fields like development, education, psychology, and counseling, they help kids understand and manage being in the hospital. For example, they’ll listen when a child needs to talk, calm fears about what’s happening, or provide distractions like books and games.

The medical team meets every day, usually in the morning, to discuss each patient’s case in detail; these discussions are known as rounds. You may see a group of doctors, nurses, and others walking from patient to patient, planning the medical care for each patient. During rounds, you may be asked to stay in your child’s room or instructed to not enter or exit the PICU. This is to protect the privacy of other patients.

Family-centered patient care might be practiced in the PICU. If this is the case, you’ll be asked to participate in your child’s daily rounds. If you’re not present for rounds or don’t want to participate, the attending physician will inform you of the daily goals for your child by phone or in person.

By understanding everyone’s role and how each contributes, you may find the group of people caring for your child less intimidating.

What Should Kids Expect While in the PICU?

Possibly the most alarming aspect of the PICU environment is the medical equipment that may be attached to your child. The machines have alarms and display panels, and the noise and lights can be overwhelming.

Your child’s stay in the PICU might include:

• IVs. Almost all kids in the PICU have an intravenous catheter (or IV) for fluids and medications — usually in the hands or arms, but sometimes in the feet, legs, or even scalp. An IV is a thin, flexible tube inserted into the vein with a small needle. Once in the vein, the needle is removed, leaving just the soft plastic tubing.

  Some situations require larger IVs that can be used to deliver greater volumes of fluids and medicines. These are known as central lines because they’re inserted into the larger, more central veins of the chest, neck, or groin, as opposed to the hands and feet. Arterial lines are very similar to IVs, but they’re placed in arteries, not veins, and generally are used to monitor blood pressure and oxygen levels in the blood, not to give medicine.

• Medications. Most medicines can be given anywhere in the hospital, but certain ones that can have dangerous side effects are only administered to children who are closely monitored in the PICU. Instead of being given every few hours, some are given continuously, several IV drops at a time, and are known as drips. Doctors may use these medicines — like epinephrine, dopamine, and morphine, for example — to help with heart function, blood pressure, or pain relief.
• Monitors. Kids in the PICU are attached to monitors. The monitors are secured to the body with chest leads, which are small painless stickers connected to wires. These leads can count a child’s heart rate and breathing rate. Many kids are also connected to a pulse oximetry (pulse-ox) machine to check blood oxygen levels. Also painless, this machine is attached to the fingers or toes like a small bandage and emits a soft red light. Unless blood pressure is being directly monitored through an arterial catheter, kids usually will also have a blood pressure cuff applied to their arm or leg.
• Tests. Doctors may order a variety of tests to get more information, such as blood tests and urine tests. Sometimes they’ll test cerebrospinal fluid (CSF), which surrounds the brain and spinal cord. Images or pictures of different parts of the body also might be taken through an X-ray, ultrasound, computed tomography (also called a CT or CAT scan), and magnetic resonance imaging (MRI).
• Ventilators. Kids in the PICU sometimes need extra help to breathe. This may mean getting some extra oxygen from a face mask or tubing in the nose. But sometimes, a child needs to be connected to the ventilator (or breathing machine). This is done with an endotracheal tube (a plastic tube placed into the windpipe through the mouth or nose) or a tracheostomy (a plastic tube inserted directly through the skin into the windpipe) connected to the ventilator on the other end. There are different kinds of ventilators — different situations call for different machines — but they all serve the same basic purpose: to help a child breathe. A child will receive sedative and pain relief medicines while the breathing tube is in the windpipe.

Taking Care of Yourself

In the PICU, all of your child’s physical needs will be met by the staff. You, as a parent, are there to provide emotional support, love, and a familiar voice or touch. However, you shouldn’t feel as if you have to stay at your child’s bedside every minute of the day. Getting away from the commotion of the PICU briefly or even leaving the hospital grounds can help you gather your thoughts.

Staying around the clock with a child who’s in the PICU for more than a few days can be both physically and emotionally draining. Although some hospitals let parents spend the night with their child, some do not. Often, hospital staff will encourage parents to go home, get a good night’s rest, and return to the PICU refreshed in the morning, which can help them be even more of a comfort to their child.

If the hospital allows parents to spend the night, the decision whether to stay in your child’s room is yours. Either way, the PICU staff will support you and reassure you that your child will be well cared for. Whatever you do, make sure you get enough rest to be able to support your child throughout the PICU stay.

When Kids Leave the PICU

While some patients are sent home directly from the PICU, many are transferred to a regular floor of the hospital for further, less-intense monitoring and follow-up care. Still, discharge from the PICU is a significant milestone on the road to recovery. It means that a child no longer needs such an intensive level of monitoring, therapy, and/or nursing care.

But leaving the PICU might also cause some anxiety. It’s not unusual for parents of kids who were in the PICU to think, “He was so sick and now he’s better. But shouldn’t he stay here until he’s completely back to normal?” But the doctors and nurses in the PICU won’t transfer kids before they think they’re ready and stable, and the team on the hospital’s regular floor will have the resources necessary to continue guiding your child’s recovery.

Caring for a critically ill child is always stressful and difficult. But understanding the people and things in the PICU can help ease your family’s stress — leaving you better able to support your child and plan for when the entire family is home together again.