Babies and Children, Disease and Illness, Personal

Congenital Diaphragmatic Hernia, Part 1: Where I’ve Been the Past (Almost) Year

As you may already know, a fact which I certainly have admitted to before is this: When I get pregnant, I get really sick. Last November, I learned that I had, indeed, become pregnant with our third baby and went through the usual long-lasting nausea that accompanies my being with child.

 

What we didn’t know at that time, what we found out in the following February, was that our baby had a rare congenital condition called Congenital Diaphragmatic Hernia. CDH isn’t very common and it’s rarely caused by genetic factors, but the mortality rate for babies hovers around 50%. Upon a follow up ultrasound, we also learned that the hernia of the diaphragm was severe on the left side, with several of the belly organs poking up into it. The problem happens to the lung which, when it comes into any resistance, stops growing. Not only is the lung less able to give oxygen to the body, it’s less able to work because of pulmonary hypertension.

 

As you can probably imagine, the news was devastating. No parent ever wants to hear that their baby is likely to die, and no parent ever wants to have to make the tough decisions that come. But we made them.

 

We decided that I’d relocate to Cincinnati in the spring with our other two kids so that I could be treated at one of the best children’s hospitals in the country. I am forever grateful that my in-laws lived just across the river in Kentucky and that they allowed for us to stay with them for what ended up being about 10 weeks.

 

After twice-a-week doctors visits at the University of Cincinnati (they’re wonderful!) and multiple tests done at Children’s (they’re phenomenal!), we made it to the scheduled c-section date, June 20, and were surprised with a beautiful baby boy, whom we named after his father.

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Meet John Frederick Novak, V

I will write more on CDH and the treatment path we chose to take, but for now let me give you the basics. I spent 6 days in the hospital recovering from the c-section, something I’d hoped to never have to have. I saw Johnny hooked up to an ECMO machine, the device that kept him alive 24 days by oxygenating his blood and yet that very same lifesaving technology is also bound to kill one if left on it too long. We had the best doctors and nurses (and insurance, thanks to the military) that one could ask for, who took care of Johnny around the clock but even then it wasn’t enough.

 

Johnny left us July 14, his little lungs unable to exchange carbon dioxide for oxygen in what resulted was a buildup of acidosis once he was taken off ECMO. It was the only time I got to hold him.

 

I won’t lie, it’s still very painful to realize that I’ll never get to bring my baby boy home but I also feel strongly that people should hear Johnny’s story. I didn’t get many pictures of him when I visited him because I was too busy holding his little hand, foot and head, and talking to him and remembering his sweet disposition when he was awake, but those 24 days changed my life in so many ways for the better. There have been so many blessings throughout it all. I’ve been surrounded by the thoughts, love and prayers of family, friends, whole church congregations, and complete strangers. I’ve been embraced by a community that I’ve not long been a part of, who’ve gone out of their way to help our family live through the time of separation and bereavement. We even bought a house during that time!

 

It is frightening when you learn that your child has a life-threatening congenital condition but that’s why I write this. I want parents to not fear the worst, even though it will hurt; to embrace the moments they’ll have with their baby, even if they’re fleeting. We don’t always understand why things happen but I believe that we’re all given time in this world because we have a purpose and that is truly amazing. I don’t know how Johnny’s short life affected people but I know it did, and I look forward to sharing my thoughts on Johnny and CDH and the hardships we all have faced, no matter how inelegantly they are put, with the hope that they will help others.

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