RSV 101: What Every NICU Parent Needs to Know

Child receiving a nebulizer treatment.

by Kelli Kelley, parent of two preemies and Amy Carr, parent of one preemie

For most infants, respiratory syncytial (sin-SISH-uhl) virus (RSV) causes an illness like a common cold in the upper and lower respiratory tracts. But some babies, including those born preterm and those with special health care needs, may be at high risk for a severe infection which can cause pneumonia or bronchiolitis, inflammation of the small airways in the lung. These conditions can lead to serious complications, re-hospitalization and in some cases, death. According to the Institute of Allergy and Infectious Diseases, 75,000 to 125,000 children in the United States are admitted to the hospital for RSV infections each year. Fortunately, education about the virus and prevention steps can help you reduce your child’s risk.

Ariel Doggett shares her family’s experience with RSV: “Like most families RSV hit us unexpectedly. Our son, Will, was born four weeks early, at the tail end of RSV season and didn’t meet the criteria to qualify for Synagis. I was not fully aware of all the dangers of RSV. Will ended up contracting RSV when he was three and a half weeks old. He quickly deteriorated medically and was med flighted to Children’s Hospital in Boston. He was placed on life support within his first week of hospitalization and as a last resort ended up on a heart-lung bypass system for almost two weeks. During his subsequent three month ICU stay for RSV he suffered a stroke that left him with a significant visual deficit, right-sided weakness, chronic lung disease and asthma.

Is Your Baby or Young Child at Risk?

A preemie may appear healthy, yet still have injured lungs. Chronic Lung Disease (CLD) is the result of a baby’s lungs getting irritated or inflamed. Babies may need a machine called a ventilator to help them breathe. Pressure from a ventilator can sometimes irritate the fragile lungs of these babies, which can cause CLD. CLD may also develop in babies who have received high levels of oxygen for a long time or have had pneumonia. Because their lungs are not normal and may still be healing, babies with CLD are at increased risk for severe RSV disease.

Risk factors for premature infants and young children may include:

• Young chronological age (≤12 weeks of age) at the start of RSV season.
• Being around other children at daycare.
• Family history of wheezing or asthma.
• Exposure to tobacco smoke and other air pollutants. Never let anyone smoke around your baby.
• Multiple births. Twins, triplets, and other multiples are often born premature and have a low
  birth weight.
• Low birth weight (less than 5.5 pounds).
• Crowded living conditions.
• Pre-school or school-aged sibling(s).
• A congenital heart defect (CHD) or heart condition.
• Chronic lung disease like cystic fibrosis.
• Weakened immune system due to illness or treatments.

A severe RSV infection may lead to a serious lung infection, repeat doctor visits and hospitalization. Working with your doctor, you can create a protection plan for your baby.

How Early Was Your Preemie?

If your baby was born at 28 weeks or earlier…Your baby may not have received all the virus-fighting substances, called antibodies, from mom. Also, babies born at 28 weeks may have small, underdeveloped, and narrow airways for breathing. This puts them at high risk for severe RSV disease.

If your baby was born at 29-31 weeks…A bad lung infection can cause clogged airways and serious breathing problems that might lead to hospitalization.

If your baby was born at 32-35 weeks…and is 6 months or younger at the start of RSV season, he or she is considered to be at high risk for severe RSV disease.

If your baby was born at 36 weeks or later…Most full-term babies get a mild form of RSV disease.

Symptoms and Diagnosis

An RSV infection usually causes moderate-to-severe cold symptoms in the upper and/or lower respiratory tract. In young infants, the symptoms may be less obvious. According to the American Lung Association, “In very young infants, the only symptoms may be irritability, decreased activity, and breathing difficulties.”

• Coughing, sneezing or wheezing that does not stop
• Stuffy or runny nose
• Fast breathing or gasping for breath
• Spread-out nostrils and/or a caved-in chest when trying to breathe
• A bluish color around the mouth or fingernails
• A fever (in infants under 3 months of age, a fever greater than 100.4°F rectal is a cause for concern)
• Mild sore throat
• Lower appetite
• Trouble sleeping

For diagnosis, your baby’s physician may test a nasal swab for evidence of the virus. A chest X-ray and/or oxygen saturation test may also be done to check for lung congestion.

Treatment

As with many viruses, once the diagnosis is confirmed treatment is limited to managing symptoms. Less severe cases may receive medicine to reduce fever or medicine delivered via a nebulizer, which converts medicine to an easily-inhaled mist to assist the lungs during an infection. Fluids are often recommended especially for young children and infants to prevent dehydration. A bulb syringe can be used to suction mucus from nasal airways in infants.

If your child has severe form of RSV, he or she may need to be hospitalized and treated with oxygen, have mucus suctioned from the airways or be placed on a ventilator to assist with breathing. Often hospitalization lasts a few days with most children recovering within one to two weeks.

Prevention

RSV spreads just like a common-cold virus. According to the CDC, “people infected with RSV are usually contagious for 3 to 8 days. However, some infants and people with weakened immune systems can be contagious for as long as 4 weeks.” Because contracting RSV does not give protection from future infections, your child can get RSV multiple times—even during a single season. The first infection is usually the most severe with subsequent infections generally having milder symptoms. Taking a few extra precautions around your family and friends can help protect your baby and young child during RSV season.

• Wash your hands thoroughly before touching your baby, and ask others to do the same.
• Cover your coughs or sneezes and show siblings how to practice good hygiene.
• Don’t let anyone smoke in your home or near your baby or child.
• Wash your baby’s toys, clothes and bedding often.
• Don’t share eating utensils and cups with one another.
• Consider regularly disinfecting high-traffic hard surfaces such as door knobs.
• Keep your baby away or limit exposure to crowds, young children and anyone with colds.
• Talk to your pediatrician about palivizumab (Synagis®) shots during RSV season.

Preventative Injections

Palivizumab (Synagis®) is the only FDA-approved medication to help protect high-risk babies from severe RSV disease. Even though it is given as a shot by your healthcare provider, it’s not a vaccine because it works differently. Each shot, which is given monthly during RSV season, provides a dose of virus-fighting substances called antibodies that help prevent severe RSV disease from infecting your baby’s lungs.

“RSV is one viral illness that actually can be prevented with adequate prophylaxis,” said Dr. Sarmistha B. Hauger, Director, Pediatric Infectious Disease, ‘Specially For Children, Dell Children’s Medical Center. “Babies who fit into the high risk criteria and are born at the time that RSV may be circulating in a community should be identified quickly, and begun on a regimen of monthly injections of palivizumab (Synagis®). This antibody is extremely effectiveat preventing serious illness secondary to RSV,” she said.

Preemies are often born before getting enough antibodies from their mothers to help fight RSV and other viruses. Preemies are also at greater risk for severe RSV disease because their lungs are less developed and their airways are narrower than those of full-term babies. Synagis® helps preemies by providing more infection-fighting antibodies to help protect their vulnerable lungs from RSV. The shots are effective for about a month, which why it′s important to get every single shot on schedule during RSV season.

RSV Season

When it comes to protecting your baby’s growing lungs from RSV, timing is everything. RSV season usually starts in the fall and continues into spring, but the season may be different where you live. So your first step should be talking to your baby’s healthcare provider to find out when RSV season starts and ends in your area. Visit www.rsvprotection.com to search for RSV season by state or visit the Centers for Disease Control which forecasts RSV season by region, then talk to your pediatrician about how to help protect your preemie.

“While as his Mother I would give almost anything to not have had Will go through all of that I would not change any of it since it made him the wonderful, happy, loving little boy he is today. That being said I do have to wonder if had he been given preventative protection against RSV could all of it have been avoided? The importance of proactive, preventative innoculation cannot be stressed highly or often enough. You are the best advocate your child has. It is okay to question the Doctor and be your child’s voice,” said Doggett.

Read Dr. Sel Unite’s article:

• Tips to Stay Well During RSV Season

What Does Your Insurance Say About Covering Synagis?

• Texas Medicaid & CHIP
• Blue Cross Blue Shield of Texas
• United Healthcare
• Aetna
• Cigna

Tips from MedImmune

• MedImmune, the maker of Synagis®, shares tips for confirming your coverage.
• Or call RSV Connection at 1-877-RSV-9010 for assistance.

Advice from Dr. Jennifer Gunter

Doctor, mother, and author of The Preemie Primer:

• RSV primer: testing
• How to write a Synagis appeal letter (part 1)
• How to write a Synagis appeal letter (part 2)

Resources

• American Academy of Pediatrics (AAP) Guidelines for Infants and Children at Risk for Severe Illness Due to RSV Infection – accessible through the Center for Disease Control.
• American Academy of Pediatrics (AAP) – Redbook Online: Report of the Committee on Infectious Diseases – Section 3. Summaries of Infectious Diseases – Respiratory Syncytial Virus
• American Academy of Pediatrics (AAP) – Redbook Online: Report of the Committee on Infectious Diseases – Section 1. Active and Passive Immunization – Immunization in Special Circumstances – Preterm and Low Birth Weight Infants
• American Lung Association – Respiratory Syncytial Virus
• Centers for Disease Control – Respiratory Syncytial Virus
• Centers for Disease Control – RSV Surveillance Data
• MedImmune – RSV Protection This website which is sponsored by the maker of Synagis®, which provides information about RSV specifically if you have had a premature baby.
• MedImmune – Synagis. This website describes how Synagis® works, RSV, insurance coverage tips and resources.
• National Institute of Allergy and Infectious Diseases – Respiratory Syncytial Virus - This Institute is researching new medicines to help prevent and treat RSV. They worked with MedImmune to develop Synagis®.

Kelli Kelley is the founder and executive director of Hand to Hold and the mother of two preemies, one born at 24 weeks and another at 34 weeks. Amy Carr is the public awareness director for Hand to Hold and is the mother of a preemie daughter born at 35 weeks and who contracted RSV when she was 9 months old.