When we mention our son was in the NICU (neonatal intensive care unit) we are always met with people jumping in and asking if he was premature.
We then look up to find a questioning expression, as if people don’t quite know that a full-term baby could be admitted to the NICU.
Elijah was born at 38+3 weeks gestation, which classifies him as a full-term baby. He was admitted to the NICU with an undiagnosed heart defect and suffered a neonatal stroke.
Out of the four babies who were in the room with him, Elijah was the only full-term baby. He probably weighed more than all the premature babies combined, and could barely fit in the incubator, but he was incredibly sick and fighting for his life.
To date I didn’t know anyone else whose baby was in the NICU that wasn’t premature.
Sometimes having a baby that isn’t premature in the NICU can make you feel a bit of a side note, almost like you aren’t as important. You feel like you shouldn’t be there.
I found that lots of charities and organizations don’t have much information for full-term NICU babies. Most is geared towards premature babies. I found myself reading through it and realizing most of it didn’t apply to us. Even the photos used in most hospital literature and campaigns didn’t feature any full-term babies.
There are countless premature charities, world recognized days, books, leaflets. The wording of some resources can place full-term and sick babies behind the focus of premature ones. But full-term babies and their families deserve to be recognized too.
People automatically assume when your baby is in the NICU, they are premature and when we have explained no, he was full term we were told, “Well, at least that was lucky.”
These statements are hard to swallow when your baby’s heart doesn’t work and he has just suffered a stroke that could render him disabled.
You have tumbled down a rabbit hole that exists behind two looming double doors you know nothing about, and you are left helpless.
In the media, most stories and articles about the NICU portray premature babies, and at times this can be isolating to a NICU parent like me. We feel out of place, like we don’t have anything to relate to and we need something to comfort us, something to find hope from just like everyone else.
This is about us all going through a truly traumatic time and supporting one another. It is about raising awareness that not all babies in NICU are premature. Some, like my son, are full-term, yet incredibly sick.
We need to make sure that there is relevant information for full-term and premature babies. We need to be equally represented by charities and in the media. We need to make sure that people recognize that full-term, sick babies are admitted into the NICU every day. We need to make sure each and every NICU parent is supported right from the start of their NICU journey and have everything they need, whether it’s the relevant information from the hospital, a charity or organization that can help or just a blog they have stumbled upon that suddenly makes them feel understood and less alone just for a little while.
Four years later we are still plagued with the misconception that Elijah was premature because he was in the NICU. I don’t mind explaining it to people, as I want to raise awareness and start conversations about the NICU and the issues parents face.
The NICU Club is one we didn’t ask to be part of, none of us do. But we nevertheless have a full-life membership. We are in it together, premature or full-term. There is no one size fits all, but we can all be open, honest and get the support and representation for everyone.
About Vicki Cockerill
Vicki Cockerill is a freelance content writer and NICU/CHD mum to two boys. She authors The Honest Confessions Of A NICU Mum, co-founded the Knackered and Norwich Social Club and campaigns for NICU and MMH issues. You can contact her via her blog or social media: Facebook, Instagram, Twitter, LinkedIn.