Ella Grace’s CDH Story
I will never forget the day that I found out about my daughter's diagnosis. I was 30 weeks pregnant when the doctor told me very bluntly that she had Congenital Diaphragmatic Hernia (CDH). Congenital Diaphragmatic Hernia is a birth defect in which the diaphragm—the muscle that separates the abdomen from the chest—does not develop completely. This causes a hole where abdominal organs can migrate into the chest. When that happens, it doesn’t leave enough space for the lungs to develop normally, making it hard for the baby to breathe. 1 in 3,600 babies are born with CDH. Ella had a left-sided CDH; in her case, her intestines had moved into her chest, pushing her heart to the right side and leaving no room for her lungs to grow. I remember the doctor exactly telling me that if this were 25 years ago, he would’ve told me to have an abortion. Like, if that should make me feel any better. He mentioned my daughter would need ECMO immediately after birth. He basically summarized what her life would look like and how limited it would be.
I left that office in tears. I was shocked, heartbroken, and confused. I had never heard of CDH. I went straight to Google for answers, which only made it worse. I lost faith. I couldn’t believe this was happening to my baby.
The rest of my pregnancy was a blur. I just couldn’t feel excited about this pregnancy because I knew that while my baby was safe in my belly, the moment she was born, she wouldn't be able to breathe on her own. I didn’t want a baby shower because I kept thinking what if my daughter doesn’t make it. I didn’t want to plan a life with her and, in the end, be even more broken. As depressing as this sounds, I was preparing myself for the possibility of losing her.
A year ago, on April 1st, you were born at 3:33 am. You were immediately taken away from me and intubated. Watching you hooked up to so many wires and machines was the most painful feeling I have ever felt in my entire life. I kept trying to look for answers as to why this was happening, but I still couldn't understand. I couldn’t understand why you had to suffer. Eventually, I left everything in God's hands, and it led to prayer, after prayer, after prayer. Thankfully, you didn't need ECMO, so your repair surgery was scheduled a little earlier. Surgery day was very difficult as well; watching those double doors close behind you, my 3-day-old baby was so traumatic. Your repair surgery was a success; you’re such a fighter. I will forever be thankful for the amazing NICU team at Hassenfeld Children’s Hospital at NYU Langone. For Dr. Jason Fisher, who performed the surgery. A few days passed, and you were extubated, and I was finally able to hold you for the first time. You were 14 days old, and it was a feeling of pure joy that I hadn't felt in so long. Every night, leaving the NICU was a battle, but after 27 days of you fighting, we were finally able to bring you home.
I will never stop telling your story. You amaze me every single day. This past year by your side has taught me more than I ever thought possible; you may be tiny, but you have impacted so many lives, and you have made me a better person. You have taught me to be hopeful, to stay positive, to lean on my faith, and to push the negativity aside. If I could go back to the day I found out about your diagnosis, I would look for support through therapy or support groups such as Tiny Hero and the CDH Foundation. I would remind myself every day that these babies do make it, there is hope!! Medicine is so advanced now and there are amazing doctors dedicated to this. After everything you’ve been through, you are still the happiest baby ever. You are so strong and you’re such a fighter. I love your little laugh, your never-ending smiles, and how brave you are. I love every single thing about you. I can’t wait to watch you grow and see all the things you’ll accomplish. You are the best little sister we could have asked for. This journey hasn’t been easy, but you have made it worth everything. Ella Grace, you are our living testimony, our true miracle, and an answered prayer. The life that we are living by your side is literally a dream come true. We love you so much. We will never stop thanking God for your life.
