RSV 101: What Every NICU Parent Needs to Know

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

Baby with Nebulizer

©Depositphotos.com/Shershellka

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:

What Does Your Insurance Say About Covering Synagis?

Tips from MedImmune

Advice from Dr. Jennifer Gunter

Doctor, mother, and author of The Preemie Primer:

Resources

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.

Comments

  1. colleen mullin says:

    I have a very close friend that is in the hospital with her 4month old. He was born 4 weeks early. She has been going to the dr’s here if Florida about the son’s colds and his belly button popping out like nothing I have ever seen before. With no help from them. I am guessing cause she is on Medicaid. Her and her husband went to look for a home in South Carolina within two days being there her son got really sick they took him to a hospital. They had to air lift him to Charleston, SC and now this little man has had one lung collapse. He had been under now for five days. When they take him off the machine his heart stops. Now his heart has stopped five times. Can some one please help me understand something? What is it doing to his body as a whole every time his poor little heart stops? And with him being under for so many days, what is that really doing to his little brain? I am so scared and lost with the whole medical stuff going on. I just need someone to be bluntly honest with me please! Thank you for your time in this extreme matter in my life…Colleen Mullin.

  2. Dear Colleen,

    I am so very sorry to hear about your friend’s child. I want to start by saying that Hand to Hold is staffed by parents. We are not qualified to provide medical evaluation or recommendations. With that being stated, I will say that preemies are very unpredictable. They are very resilient and we have seen stories that are nothing short of miracles — my own son included. But, as you already know, sometimes their little bodies are just unable to overcome the tremendous challenges they face. Without knowing his medical diagnosis and the treatments he is receiving, it is difficult for me to be able to provide you with anything other than hope. As I said, we have seen so many children overcome almost impossible odds. But, it will likely be a long and challenging journey for your friend and her entire family.

    We are here to support your friend should she wish to talk directly to another parent. We know that peer to peer support is extremely helpful in these situations. Feel free to contact our Family Support Navigator, Erika Goyer, should your friend wish to be matched with a Helping Hand mentor.

    My best wishes to you and your friend. She is so lucky to have someone like you who cares so much about her and her baby. She will need you now more than ever.

    Kelli

  3. I find differing opinions about RSV & the 2nd season. I have a 16mo old now, he got Synagis his first RSV season, we’re trying for a second. What are the rules? Same precautions (keep baby pretty much quarantined?) for the second season. How about the 3rd? =) Any government/dr websites on this topic you could recommend?

  4. Dear April,

    The American Academy of Pediatrics publishes it’s “Red Book” which is a comprehensive listing of childhood diseases and vaccines. You can find their guidelines on RSV and the recommendations for children born early.
    http://aapredbook.aappublications.org/content/current – table of contents
    http://aapredbook.aappublications.org/content/1/SEC8/SEC56/SEC57.extract – link to immunization for Preterm/VLB Infants
    http://aapredbook.aappublications.org/content/1/SEC131/SEC249.extract – RSV

    The Centers for Disease Control also has a good writeup about RSV. In general, they appear to be most worried about a second season for toddlers (less than 2 years old) who have heart disease or lung disease (such as BPD) because they would be more vulnerable to a severe RSV infection.
    http://www.cdc.gov/rsv/about/faq.html

    Synagis is a shot of antibodies to help bolster a child’s immunity and it is not a vaccine in the true sense of the word. No antigens are produced as a result of the shot. It cannot guarantee that a child will not get RSV, but it obviously it’s designed to prevent the most severe manifestations of the disease for many. This link is to the manufacturer’s site with the link to the full prescribing info at the bottom as a link which shows the shot is only proven safe for children 24 months or less.
    https://www.synagis.com/what-is-synagis-overview.html

    Every child’s circumstances are different, which is why it’s good to be informed and to have this information when you approach your doctor and together come up with a plan to keep your child protected during a second season! My take on the shot is that it’s designed to buy little ones precious time as they get bigger and stronger. Taking precautions such as handwashing is always a good idea – even if it’s more challenging when toddlers get mobile! Hope these resources help shed some light so you and your dr. can decide whether a full-quarantine is needed again this season, shots make sense, or if using precautions, the quarantine can be somewhat less stringent.

    Best,
    Amy Carr, Preemie Mom
    Hand to Hold Public Awareness Director

  5. Michelle Howard says:

    My son is 4 months old and he was born 3 weeks early. He weighed 5.1 lbs at birth but has always been healthy. He had rsv two weeks ago and we caught it early so we didn’t have to use a nebulizer and he bounced back pretty quick but now I think it is making another round. My question is that I discussed already if we could vaccinate him and she said he couldn’t. ..I can’t recall why exactly why we couldn’t but does this seem correct or should I ask again

  6. Hi Michelle,

    You might enjoy a recent article we published on RSV that provides more information about the risks along with sources that you can use when you talk with your doctor. We recently had a FB Chat on this very topic which we should be publishing soon with even more resources and things to think about.
    http://handtohold.org/resources/helpful-articles/5-things-every-nicu-parent-should-know-rsv/

    You probably know that the RSV Shot isn’t a “vaccine” in the true sense of the word. It is a shot of antibodies to give the most vulnerable children passive immunity to buy them some time for airways to get bigger and to become stronger. Depending on how early your son was born and any complications he faced, your doctor would know best about whether he fits the “high risk” profile for eligibility for shots. Not every preemie is eligible for them, though many are that first year.

    In any case, there are things you can do to reduce his risk such as avoiding large gatherings, handwashing, daycare/playgroups and such (more details in the article). My daughter was a late term preemie and caught RSV at 9 months old at the daycare she attended. Amazingly, no one warned us about RSV and I had never heard of it! She was also 5 lbs at birth like your son, and we used the nebulizer for many seasons afterwards whenever she came down with any sort of respiratory bug. Every child’s situation is different, of course, but you are smart to be vigilant and research the best ways to reduce the risk for your little man.

    Take good care,
    Amy

  7. My son was diagnosed with RSV march. It was a very scary thing to go through. He was put on oxygen for almost a week.

  8. Kelsey Barnett says:

    I am a mommy of 4 and 12weeks pregnant with our 5th. Our youngest son Jasper is only 6 months old and was born at the end of 35weeks. He almost died. He got stuck and his cord got clamped off – they called it a prolapsed cord. He went 20min without air and was navy blue purple and his lips almost black when we finely got him out he was limp and not breathing. The doctor never made it to our room but my husband and me an my mom and a nurse did it. Us girls rubbed and rubbed him while my husband ran for NICU and they came in cut the cord and rushed him into a little room off of mine an had to inflate his lungs and most of his color came back but he was then taken to NICU. I was able to see him about an hr later, and he did fine. The nurse said she had never seen a baby that little go through something like that and overcome it so fast and that most babies that far gone mostly don’t come back that we were lucky and then after 4hr inn

  9. Kelsey Barnett says:

    In the NICU he came to my room were he stayed till we went home a few days later an then at three weeks he got spinal meningitis and was rushed to a bigger hospital that had a PICU and went home 5days later. They said he was fine and he has been ok since other than trouble feeding. And now he has RSV I dealt with this last year, but it was nothing like this. Our daughter and now 2 and our 16 month old also have it. They had it same time last year, but this year 3_5days they’re good other than a running nose and cough but little Jasper our first preemie sounds bad. I have taken him to the ER 2 times already and Thursday his fever spiked up to 106.2. They gave him IV fluids an antibiotic and sent him home. He still has a fever staying around 102.4 and I am sucking him out but not much comes out. He can’t hold a lot down and when it comes up, it’s thick and slimy and I have been standing in the bathroom with the shower running hot for steam but the doctors ever put him on breathing treatment like the others last year. I know kids, but preemies scare me and I am lost and worrying so much I don’t sleep just watch him breathing.

  10. My ten-day-old nephew was full term and 9 lbs., 3 ozs. at birth. Yesterday, he was hospitalized with RSV after his mother took him to the dr. for a cold and b/c he was not nursing well. Because of his age, his prognosis is rather reserved. He is receiving oxygen, and his dear parents are so worried. Without any signs of respiratory stress or concerns from birth until he developed symptoms of a cold early yesterday, what are his current risks? His pediatrician, who is well-trusted and who knows the family, including a two-year-old and a four-year-old, hospitalized him “for a few days.”

  11. danielle says:

    I have a just now 3 month old little girl yesterday they diagnosed her with rsv after 2 days of coughingwhat do i need to look for as a concern to go to emergency room they did not tell me anything other than to suck her nose with the bulb and run a humidifier please help me understand what’s going on with my baby and when i need to seek medical attention and signs to look for

  12. Hi Danielle,
    We always recommend consulting with your physician if you have questions about your daughter’s care. If she is having any problems breathing, seek immediate medical help. Symptoms related to breathing are the most typical complication for an RSV infection in babies who may have risk factors — such as spending time in the NICU.

    Here’s another article that describes symptoms of an RSV infection which I hope will help you: http://handtohold.org/resources/helpful-articles/5-things-every-nicu-parent-should-know-rsv/

    Best regards,
    Fellow NICU mom
    Amy

  13. hi
    My son is 8 months old and he is in hospital right now in NICU. They just put him on ventilator. He was so sick since four days and he was on oxygen helium but his respiratory rate was high in 60-70 so they just decided to put him on ventilator. He was so lethargic since two days they are not allowing him to feed because of the choking hazard. They are suctioning his mucous through his nose and mouth every four hours. It makes his nose swell. I am so so worried. Does any one has any idea or experience with this kind of severity of this virus? Please just pray for him.

Trackbacks

  1. [...] pneumonia, bronchitis, inflammation in the airways of the lungs and can even kill the baby (see this website fore more details). Here’s the reality – every preemie mom dreads RSV season. I am [...]

  2. [...] Project SweetPeas Peek a Boo ICU Preemie Prints Touch Free Hand Sanitizer Dispenser Why it’s important for us to be up to date on our vaccines RSV 101 [...]

  3. […] season is just around the corner for us. Surpisingly, we do not dread the “lock down” required to keep our baby’s lungs healthy. Last year, we managed to have a good time while […]

  4. […] it away from my kids. Its a common virus that we get and think it’s a cold. In preemies, RSV is a major health concern. It is the number-one cause of sickness and re-hospitalization for […]

  5. […] would need hospitalizing again. Before the twins, I had never heard of RSV– but it’s a pretty big deal for preemies and even full term infants. Our amazing pediatrician Dr. G was on top of everything […]

Speak Your Mind

*

Site last updated April 17, 2014 @ 4:20 pm; This content last updated April 9, 2014 @ 8:32 pm