I have read through many posts here regarding Synagis given to preemies. My baby was full term, but born (at home) with EA - Esophageal Atresia and TEF - Tracheoesphageal Fistual. She had a repair about 24 hours after birth. She also has an ASD - Atrial Septal Defect. We returned home after 2 weeks in the NICU. Our pediatric pulmonologist is pushing us to give her Synagis. She is doing so well and 100% breastfed. Although, she does have 3 older siblings - all healthy, never been vaccinated, never had an antibiotic, born at home and breastfed. So, the idea of synagis (of anything really) is hard for me. Thoughts? Experiences? Thanks so much!
My DD was born at 32w4d last year, and I fought with the insurance company to get her Synagis. I would do it again.
I have an older DS who goes to daycare (aka the Viral Experiment Station), and a busy household with a lot of adults coming and going. I love the way our friends are in our lives, but it does mean that we're exposed to every illness going. DD had a fair bit of respiratory distress after birth, and her pediatrician felt that her lungs were "reactive", likely to put her at risk for pneumonia. While I breastfed DD in part because of the additional resistance I hoped it would give her to disease, I am a belt and suspenders kind of girl in this area.
Given your DD's respiratory concerns, I would certainly opt for Synagis if I were in your situation. Insurance companies are *really* reluctant to pay for this stuff. If your doctor is willing to go to the mat with them, or thinks your DD's situation falls within their guidelines, I'd go for it.
The respiratory problems scare me a lot. How many other children is your DD exposed to? How often do her siblings get colds?
I get the Synagis for DS. He had a terrible start and was on breathing help for the first few weeks of life. His sister is in daycare, and he will be joining her next week, and she has endless colds, mostly due to her allergies and astma. So the fact that she has asthma, born at term with no respiratory distress, makes me very wary with DS's respiratory system.
You know your baby best, and what odds play into the equation for your family.
We have a 33-weeker who has turned out to be super-healthy. His ped encouraged Synagis in a precautionary way during the 6 months of RSV season. Our insurance was willing to pay the entire (ridiculous) cost. We did it for two months and then quit. I can't make risk assessments for your family, but here was ours:
The main reason you would give a kid Synagis is if they have a genuinely higher risk for RSV:
A) Does your baby have respiratory issues?
B) Is your baby exposed to a lot of people who may bring home RSV? Go to daycare? Siblings who are in school?
A "yes" answer to both would make me think that your baby is a good candidate for Synagis.
(Our kid had none of this. I think Synagis is a standard precaution as far as a LOT of doctors caring for premature kids is concerned.)
The other thing we discovered in reading about Synagis is that it does not actually lower mortality rates, it lowers rates of hospital admission. Of course, staying out of hospitals is a terrific way to stay healthy, so I don't want to discount that.
My family is laid-back and skeptical, but pretty sciencey. We vaccinate our kid basically on time. Our refusal of Synagis had nothing to do with concern about side effects and mostly to do with the fact that it made me really angry that our excellent insurance was going to pick up the huge tab for giving our healthy baby this drug, because my family is LUCKY. Whereas many other families that may have a genuine need for Synagis - a baby who has to be in daycare early, and who had breathing issues in the NICU - can't get it, or have to pay for it out of pocket. That's thousands of dollars.
So. We quit. But again, nobody is going to be able to make a risk assessment for your family.
The EA, the TEF and the ASD are all respiratory issues, and will continue to be for a while even with surgical repair. I was a TEF mom and I would have been thrilled to have Synagis as an option for my daughter who was born at the beginning of RSV season. RSV is so prevalent and most people/children present with cold symptoms, they don't realize how serious it can be for an infant, especially one with health issues, to be exposed. It was a lot of work to keep my daughter safe, especially through the holidays, and I didn't have any other children bringing germs home as well.
To the OP, I am so sorry to hear about your daughter's rough start but I am so glad to hear that she is doing so well now! Can I ask what kind of TEF she had? My daughter had an H-type fistula that was repaired on day 5 of her life. We feel so lucky in so many ways with her. She didn't have the natural/gentle start to life we wished, but she has blossomed nonetheless.
If you can get the Synagis, I would personally jump on it. My daughter was full term and didn't have any problems and ended up severely brain damaged due to RSV meningitis. Granted, her case was extremely rare, but still.
It's great that you are breastfeeding and that your DD is not in daycare- those are both great in terms of her exposure and immunity. However, I will say that, when I first started working as a pediatric nurse, I was *stunned* at the percentage of the RSV/bronchiolitis babies we saw each winter who were breastfed. Obviously, this is anecdotal, but I would estimate that a good 30-40% of the RSV babies that I cared for were breastfed, and I saw many who were not in daycare/no older siblings, and yet still picked it up anyway.
I felt much more nervous about my own breastfed baby picking up RSV after noticing that, especially since RSV is so insidious and just seems like a common cold when someone over age two has it... Personally, with those risk factors, I would follow the pulmonologist's recommendations and get the synagis.
DS2 was not in daycare and breastfed, born at home, non-vaccinated (at the time), and spent 5 days in-patient on o2 with RSV at 3 months old. His 2 year old sister brought it home to him, and she herself developed pneumonia. Both kids now have RAD/asthma due to RSV. Now I have to worry with every single cold, URI or bout of bronchitis that we'll land inpatient again. I'd get the Synagis and not chance my child's longterm risk of asthma, which is greatly increased by RSV at young ages. Having a child with special medical needs is challenging enough without having to deal with unnecessary illnesses.
My DD2 was a full term, healthy newborn, born at home as well. Unknown to us, she was actually exposed to pertussis at birth, she was an Oct baby. Needless to say she did get very ill and was O2 dependent for quite a few months. I fought for Synagis for her, insurance covered a portion and we actually picked up of the rest of the huge bill. We do not vax, but DD2 had an older sibling who was around other children. I felt in her current state of still recovering that she would not of handled RSV well. She actually got RSV the next winter at age 1 and did not handle it well, and then again at age 3 where once again it was very hard on her. The last time I had a healthy 10m old who got it as well and ended up in the hospital even though he handled it far better then DD2 did, and I am an RN, I usually can keep my kids home longer then most people do. RSV is rough on normal children, with your child and her issues, and having older siblings, if she were my child, I would accept and fight for it if need be.
My first preemie didn't qualify for synagis(being born at 34weeks and living in a home without siblings in school or going into daycare) and ended up being hospitalized for RSV and a collapsed lung a mere 2 weeks after she came home. My 33weeker qualified for synagis and we did one before I felt funny about it(having her be unvaccinated and all) and turned down the rest of them. She ended up being very very very sick with endless pneumonia and bronchitis and colds for her first 2 years, being diagnosed with asthma, and has been on daily breathing treatments for the last year just to keep from getting sick. Do I think synagis would prevent that? Probably not. But it couldn't have hurt. Her first year she had pneumonia 4 times. Maybe synagis would have prevented some of that.
Both my 34week preemie (no siblings at home, but she weighed 4 1/2lbs at her lowest, and that was enough to qualify for our insurance) and 36 week preemie (he had serious growth issues and after testing discovered he doesn't make enough growth hormones, he was 5 1/2lbs, but the other issues qualified him) got synagis the first year, the second winter (this winter) River(he was the 36week baby) is getting them again, cause his immunological labs at 1 year old were horrific, so that alone qualified him, even though the repeat labs were much much better. It's not like a typical vaccine where it contains small amounts of live or dead virus and causes your body to have a immune response to that. It contains antibodies instead. Janelle did get RSV 1 month after shots ended...but she was ok, didn't need to be hospitalized. Travis, who was born at 38 weeks and obviously didn't qualify, got RSV at like 7 months and it was really scary, and he still has breathing issues now at 3 1/2 with every cold, which he didn't have before he got RSV.
I would get the Synagis. It is like an allergy shot, not a vaccination. It is extremely important if you can qualify to get it and have your insurance pay for it, because the alternative would be contracting RSV. My DD received the immunizations her first winter. She got RSV her second winter and was very sick but got through ok. I can just imagine if she had gotten RSV at just 6 months old with preemie lungs. If you can get the shots, do it!
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