A little more than a month ago, my little brother’s first baby was born. Taylor Lynn was born three weeks early and weighed just above 4 pounds.
While she was not too terribly premature, she was born with a congenital birth defect. It was noticed early on in the pregnancy that Taylor had a congenital diaphragmatic hernia (CDH).
Basically, as she grew in the womb, she had a hole in her diaphragm that allowed her organs to move into her chest cavity.
It’s a rare condition that affects approximately 1 in 2,500 newborns. In Taylor’s case, hers caused her left lung to underdevelop. The first two weeks of her life were pretty rough, not only for her, but her family.
There were times we all feared the worst while hoping for the best. We visited the hospital frequently or were in constant contact with my brother and his girlfriend for the latest updates.
During that time we learned more about how Neonatal Intensive Care Units (NICU) worked. There were several different pieces of equipment that she was hooked up to keep her alive. We learned what a majority of them were, how they worked and what they were doing for this sweet tiny being.
She fought and so did her doctors. As her right lung was fighting so hard to keep her alive, it struggled, so they placed her on extracorporeal membrane oxygenation (ECMO) to help her body receive the amount of oxygen that it needed to survive.
She fought through her right lung collapsing several times and having to be sedated and kept calm for days at a time to rest and recoup.
At two and a half weeks old, she underwent surgery to repair the hernia by placing a patch over the whole and moving all of her organs to where they belonged.
She came through, but still had a long road to go.
On Monday, she turned a month old and on Wednesday, her mom finally got to hold her for the first time. Friday, just two days before my brother’s birthday, he got to hold his baby girl for the first time.
A moment we all know he will cherish for a lifetime.
She still has a long road to go. Most days she takes little steps forward. Some days they are steps back. But she is a fighter. She continues to push forward and show us that she’s not giving up, and neither are we.
Her left lung is starting to develop and she is slowly being weaned off machines. The next big step is for her to breathe 100% on her own. She’s still receiving oxygen by a ventilator, but in due time, when she’s ready, the doctors will take her off.
It’s unknown what caused her congenital defect. Was it hereditary? Was it some other condition? Will there be any long term effects. There are many unanswered questions and very few answers.
For now, we just continue to learn more about Congenital Diaphragmatic Hernia and how it’s made its way into our lives.
We also continue to learn more about our sweet Taylor Lynn, and wait for the day we get to bring her home and show her the world.