Why I Isolate My Preemie During Flu and RSV Season

It’s October — the start of flu and RSV season in the state of Maryland. This is also officially time for my germophobic anxieties to really kick in, my paranoia about every cough, sniffle and public place. It’s going to be even more intense during our fourth flu and RSV season with Adeline, since she is attending preschool for the first time. Why am I so anxious about germs for my 3-year-old? Doesn’t she need to be exposed to germs? Why do these illnesses impact her more than most? Why did we choose to isolate her during the first two years of her life and do a partial isolation the third? I am answering all these questions and providing you the research and science behind this decision. I’ve also completed my own research and have had over 150 (and counting) preemie parents share their stories with me about this very topic.

What is preemie isolation?

Preemie isolation is significantly decreasing the likelihood that your premature baby will be exposed to germs, specifically flu and RSV, but it includes other things. You do this by staying home, severely limiting visitors, outings, getting flu shots, practicing good hand washing, and not attending family and friend events or gatherings. Basically, you become a recluse in your home and do not allow people to come over. This sacrifice is worth it in the long run when it can decrease the chance of illness for your fragile child and makes sure they have the best possible chance at life.

Our story

Our daughter was born 14 weeks early at 26 weeks old due to severe preeclampsia. Our journey was a very rocky one in the NICU as Adeline contracted NEC at 3 weeks old, and thus began our GI journey with issues with growth, food tolerance, stooling, vomiting, absorption, strictures, blockages, malrotation, volvulus, short bowel syndrome, GERD, dysmotility… the list goes on and on. She ended up needing surgery at nearly 3 months old, and when she was discharged after 114 days, she was still very sick.

At 3 years old, she’s had 12 surgeries and still has a GJ feeding tube and struggles with many GI related issues. Up until this past July, she still had a central line and continues to need a lot of medical support. We travel from Baltimore to Boston for her medical care, and she still is occasionally hospitalized.

When Adeline was getting ready for discharge from the NICU and I was trying to decide whether or not to return to work, I had a frank discussion with our team of neonataologists. They said if I could, to stay home with her. Their recommendation was strict isolation during flu and RSV season during the first two years of life (except for doctor’s appointments and therapy), no daycare, only allow people around her who had been immunized with whooping cough, gotten their flu shot, and limit visitors and germs. They even told us not to allow anyone except mom and dad to kiss her until she was 2 (I made an exception for Nonna and PopPop). They were less concerned about her being outside in nature. Even though we had to make a tremendous amount of sacrifices (financial, mental, emotional, etc.) I left my dream job to take care of Adeline, in isolation. Our lifestyle changed greatly, finances were much tighter, but I am grateful I was able to do that as I know not all families can. Last year, her third flu and RSV season, we did a semi-isolation and avoided places saturated with germs (like the children’s museum), but ventured out more. We took isolation seriously. I quit my job to care for my preemie. We left the house only for doctors appointments. We did not allow visitors. We did not attend family gatherings or holiday parties. We even had some people give us a hard time about this decision or even question it.

Why should you isolate?

One of the things people said to us that made me upset and is one of the biggest myths is, “Your baby needs to be exposed to germs to build their immune system.” Although most people were well-intentioned, they also were unaware that an infection that could be easily treated in many full term babies could be dangerous of even deadly for my preemie. Babies’ immune systems mature with time, not exposure. The best way to avoid complications and protect a maturing immune system is to not get infected in the first place. Many people confuse exposure to infections with exposure to things like dust, pet dander, etc., which has been proven to decrease likelihood of asthma and allergies. Having your young children around pets, dirt, etc. is much safer for your preemie than having them around people with germs. Before we even got to hold her, see her, touch her, we learned how to properly clean our hands. We sanitized constantly, changed our clothes before going to the NICU, and the medical professionals caring for her instilled in us that exposing her to germs was very serious business. It was so serious, that after she got very sick the first week she was born we only allowed mom and dad to touch her. Protecting her was a matter of life and death, so we took it seriously.

Your baby will be OK being isolated. It will most likely be harder on the parents. Babies are happy because they are fed, diapers are changed, they are loved, held, cuddled. Your baby will not even care they did not travel on an airplane, go to a restaurant, or have a play date. This does get slightly more difficult as kids get older, but even at 18-24 months, kids are not really playing directly with kids, but are starting to enjoy being around them. My point is, the benefits of isolation outweigh the benefits of socialization under 2 years old if you have a immunocompromised or very premature baby.

What’s the research behind this recommendation?

I really wanted to understand what it is about preemies that makes them have more complications with flu and RSV, and why they are 40 percent more likely to be hospitalized during their first year of life, why they struggle to handle some typical childhood illnesses, etc. In general, most of the studies were with babies born less than 32 weeks gestation, which is important to keep in mind. This statistic is just one of many that scared me, preterm infants are at high risk of acquiring infections, and this is a significant contributor to mortality in this group.

In Australia 3.3 percent of neonatal deaths are due to infection, but more than 70 percent of these infants are born preterm (Laws et al., 2007). The disproportionate representation of preterm infants among infection-related neonatal deaths may be due to their immature immune systems (Wynn et al., 2009). In the most basic terms, premature babies are at higher risk of developing an illness because their immune systems are not as strong, it’s immature, and they have not had as many antibodies passed to them. Usually, a mother’s antibodies cross through the placenta during the third trimester of pregnancy, which gives a newborn some immunity to diseases it has not yet been exposed to. Premature babies may not have received enough antibodies from the mother, and may also have difficulty producing white blood cells and antibodies to fight off infection.

Adeline was born in my second trimester of my pregnancy, which means she did not get the antibodies she needed in order to fight on infection. At 3 years old, her immune system still is not as strong as her same age peers.

If you do not want to hear the nitty gritty specifics, just scroll through this next part. Neutrophil, monocytes, and lymphocytes are white blood cells needed to fight off infections. Preemies have a smaller pool of these cells which impairs their ability to kill pathogens, reduces ability to fight bacteria, and detect viruses in cells. Preterm infants also have neutrophil dysfunction, cells that are needed to kill pathogens, and this dysfunction contributes to sepsis and other severe infectious complications. The low levels of antibodies, substances in the bloodstream that help protect against infection. In the later part of pregnancy, antibodies cross the placenta from the mother to the fetus. When a baby is born prematurely, they miss out on this immune system boost of protective antibodies and therefore, their risk for developing infections is higher, resulting in an increased risk for death, chronic lung disease, and adverse neurodevelopmental outcome.

My own research

I conducted a written survey and received over 160 responses from premature parents. I really wanted to hear what other parents chose to do, and their reasons for their choices. Of those who completed the survey, over 80 percent isolated their premature baby, approximately 9 percent partially isolated, and 11 percent did not isolate at all. While I cannot share every response, many parents who chose to isolate did so because their doctor advised them to, their preemie had chronic lung disease, and they wanted to decrease hospitalizations and infections. The parents who chose not to isolate, shared that they did not because they were a single parent, had to work, had multiple children in school, wanted to expose their babies to germs to build their immunity, or were not advised to isolate. This is a gentle reminder that exposing your children to infections does not build their immune system but is a very common myth. Of the parents who isolated, 97 percent were happy with their decision and the ones who were unhappy with their decision reported being unhappy, anxious and worried about their child missing out on various activities. So many parents shared that hardest part of isolating your preemie is loneliness, anxiety, missing out on events, having family and friends who not did understand your decision, lack of support, strain on relationships, having to leave job or school, etc. Choosing to isolate your preemie does have some negatives and I understand so many of them. Of the parents who chose to isolate, 14 percent reported that the recommendation to isolate was a personal decision, 47  percent reported that it was recommended by a medical professional, and 39 percent reported that it was both. I also wanted to note that 81 percent of the participants had a baby born less than 32 weeks and 19 percent were born between 32 and 40 weeks.

Tips for keeping your preemie healthy

• Isolation during flu and RSV season.
• Limit visitors to your home.
• Only allow people around your preemie who have received flu shot and whooping cough vaccine.
• Good hand washing hygiene.
• Synagis vaccine (if your child qualifies) — this will not prevent RSV but will help decrease the likelihood.
• Get your flu shot.
• Avoid crowds.
• Do not allow any smoking around your preemie.
• Limit contact — allow very few people to touch or kiss baby.
• When going out, cover the car seat or stroller with blanket.
• Babywear.
• Have a sign on the stroller or car seat asking people not to touch your baby.
• If you have family members at school, daycare, work, have them change their clothes and wash their hands before interacting with your baby.
• Share information with your family and friends to help them understand your decisions.
• At doctor’s appointments, keep your child contained in stroller in waiting rooms, bring your own toys, and ask your provider if you can wait in the car until it’s time for your appointment. (Our pediatrician does this and it’s amazing!)
• Keep hand sanitizer everywhere. I have it on my keys, in my bags, on every floor of the house, and it even hangs above her car seat so when I put her in or take her out I am cleaning.
• If you receive early intervention services, request that providers use your toys vs. bringing in toys that a variety of kids have played with.
• If you need to work, consider a nanny, in home daycare, or medical daycare with less opportunities for exposure.
• Take your vitamins, diffuse your oils ( make sure you read safety info about that), drink elderberry syrup, care for yourself.

Isolation looks different for everyone

Isolation looks different for everyone. For us, we were isolated except for doctor’s and therapies, while my friend has all her therapists come to her home since her daughter is too fragile. We all have to make decisions based on our child’s health, our current financial situation, situations with significant others, etc., in order to make the best decision for your preemie. There is no right or wrong way to do this as long as you keep your preemie’s health as your number one priority.