One of the most frequent questions I get asked is “How do you get your family to understand why isolation is important?” I also see variations of this question almost everyday in online preemie support communities.
Preemie parents struggle to find balance. When our baby comes home from the NICU, we want to celebrate! We want to have everyone over to ohh and ahh over the tiny being. We want so badly to have a “normal” experience with our baby. But, we are also painfully aware of the risks involved.
When doctors began talking about Jax coming home, they simultaneously talked about the importance of isolation. One of our doctors told us “the most effective way to prevent sickness and re-hospitalization is to limit exposure.” No contact, no germs. Maybe it’s not time to celebrate after all.
Thankfully, our family has been very understanding about our decision to keep Jax in isolation during cold and flu season. I think they “get it” because we started an open dialogue with them before Jax was even out of the hospital. We shared all of the information from our doctors. We shared our concerns. We asked for their help keeping Jax safe when he came home.
Unfortunately, many preemie parents get resistance from family about their decision to keep their preemie in isolation. So, here’s what I have to say to those people.
(This post contains affiliate links.*)
Dear Extended Family,
Isolation isn’t about you. Let me explain…
Babies who are born prematurely are different than full-term babies. First, premature babies have under-developed lungs and often require life-support and breathing tubes for days, weeks and even months. An important goal for every premature baby is to breathe on their own. Unfortunately for some preemies this doesn’t happen. Some preemies come home on oxygen support or on a ventilator. Their tiny lungs are not capable of keeping them alive without the help of a machine.
Even if there are no outward signs of breathing trouble, any baby born before 37 weeks has immature lungs. (Source)
Second, “during the last three months of pregnancy, antibodies from the mother are passed to her unborn baby through the placenta.” (Source) When a baby is born prematurely, it misses out on these antibodies. “Premature babies are at higher risk of developing an illness because their immune systems are not as strong and they have not had as many antibodies passed to them.”
When you put these two things together, immature lungs and a weak immune system, you have the perfect storm. A simple cold can cause respiratory distress and re-hospitalization!
We are in isolation to keep our baby out of the hospital and living.
It’s not about you.
So, please don’t be offended when we:
- Decline your invitation to the party.
- Ask you to wash your hands! (A lot!)
- Ask you to get a flu shot and a Pertussis vaccine. If you choose not to do this, please don’t be offended if we choose not to allow you to come in contact with our baby.
- Don’t allow you to visit when you are sick, even if it’s “just the sniffles.”
- Ask you to remove your shoes when you visit.
- Remind you not to smoke before visiting, or ask you to shower and change your clothes prior to visiting. Third-hand smoke is real and babies with immature lungs are extremely sensitive to smoke.
We know these things can be a drag. We know that hand-washing can dry out your skin. (We used CleanSmart* to help keep our hands healthy. We will still ask you to wash or sanitize and give you lotion.) We know that you think your new boots are really cute with your outfit. (We think so too, but we will still ask you to take them off.) We know that you believe in alternative medicine. (We do, too, but we will still ask you to get a flu shot.) We know that you have always heard that “babies need to be exposed to build immunity.” (We know this isn’t true for preemies. (Source))
We know that this is different for you. It is different for us, too.
We know that you want to see us! We want to see you, too. We miss you! But for now, we need to do what is best for our baby. Isolation is a way to keep our baby healthy and out of the hospital. I know how much you love our child. So, we know you’ll do everything you can to keep her safe, even if some of the things we ask you to do are out of your comfort zone.
Thank you for your understanding,
A Preemie Family
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32 thoughts on “Dear Extended Family, Isolation Isn’t About You”
I’m a neonatologist, and I have to say this is one of the best things I’ve ever read. Thank you so much for writing it, and for including your sources for those doubting family members. I tell all of these things to my premie families before they go home, and we talk about resistance from family members. I tell them that the health of their little one is the most important thing, and that they have to be the advocate for the baby, since the baby can’t. This means disappointing or hurting family members sometimes, but that ultimately you can only control your feelings and environment, and if family members or friends choose to be hurt or angry, that’s on them. Very happy for you that Jax is home and doing well. Continued best wishes for good health for all of you, and thank you again for this letter!
Smoking includes the new vapor or e-cig. Can’t tell you how many people try to argue over its not smoking. But they don’t “see” the plume of chemical fog following them.
That’s a really good point, Anita. Thanks for sharing!
The “Chemical fog” is “Water Vapor” all the liquid has is water/flavoring/nicotine. Not trying to argue just trying to educate.
Thanks for your comment, centel. It’s not only the smoke that is dangerous for people with lung disease, it is also the size of the particles in a vapor. The larger particles of water/flavoring/nicotine in the eCig water vapor are large enough to get “stuck” in lungs. For people who battle Chronic Lung Disease or asthma, this can be enough to set off an attack. Here’s a link to more information, if you’d like to read more: http://www.webmd.com/smoking-cessation/news/20140507/e-cigarette-vapor-contains-potentially-harmful-particles-review
The Alexander the Great approach doesn’t work with everyone. 🙂
I’m not sure I’m following you – but you’re right, this is only one way parents of preemies who choose isolation can explain why it is important.
The Alexander the Great approach is putting newbies on the front lines so they can get experience.
Ohhh family who KNOW about all of this, but still refuse to get a flu shot (for no reason, no allergies or anything) drive me absolutely insane. It’s such a little, easy thing people can do to protect the immune compromised (not just preemies!). I just can’t understand not doing it for someone you love.
This is our first year without isolation at flu season and it’s great. Though, they have had a cold and a stomach bug so far! Isolation is so hard, but it is not forever. I do remember that horrible feeling in January when I realized there were MONTHS of it left though 🙂
Ugh – that is definitely frustrating! I’m convinced that people literally don’t get it, no matter how much information you give (and how much you beg and plead!). you’re first year off isolation must be so exciting! I’m really looking forward to doing ‘normal” things with Jax all year long! 🙂
Wow. What a perfect letter! I still get livid about folks who won’t get flu shots. As the mama of a twice rehospitalized preemie (we had to do a night in the ER this year–but just a quick overnight, so it’s progress), and a hospitalized near-term newborn, I have had to explain this stuff countless times and love that you do so in such an eloquent and honest manner.
Hope you have some healthy friends and family who can do some no-contact (if necessary) visits! And hope you can get out for the occasional date night or ladies night!
Thank you! Isolation is tough, but it’s so worth it! I still remember your scare from last year, and then you disappeared for a while – I thought the worst! I’m so glad the little ones are doing better this year. My hubbie and I actually get a little get-away later this month, so we’re looking forward to a break from the house! 🙂 Stay healthy!