Eleanor's Story - Congenital Diaphragmatic Hernia (CDH)
At 13 weeks, I found out that I was expecting my first little girl and cried tears of joy. With a house full of boys, my husband and I were elated to find out we were having a daughter. But at our 20 week scan our joy quickly turned to fear when our ultrasound technician quietly left the room to get our OB. When our OB finally entered the room and I saw the look on his face, I just knew something was wrong. All he could tell us was that there was fluid in our daughter’s chest and her heart was pushed all the way to the left side of her body. He said, “I’m not going to sugar coat this…it doesn’t look good. I’m so sorry.” He then had us rush up to the next floor of the hospital to have a more thorough ultrasound with a maternal fetal medicine specialist.
After our next ultrasound, the MFM explained that our daughter has a birth defect called Congenital Diaphragmatic Hernia. I had never heard of this defect before, but I remember thinking oh a hernia, that doesn’t sound too bad. Then the doctor said, “I don’t think you understand what I am saying.” She explained that my daughter only had an LHR of 0.8, and there was a very likely chance my daughter was going to die. She said that the prognosis was very poor, that she was sorry, and it was ok for me to start grieving for the loss of my daughter. Then she left.
I was absolutely devastated. After that appointment, I walked blindly to my car and sat in the hospital parking lot just crying for hours. For the next few days, I did nothing but cry. I felt such overwhelming grief and hopelessness. But I couldn’t just give up on my daughter.
I started researching CDH. I read countless research articles, combed stories of families who had gone through what we were going through, and started looking into different MFM specialists and hospitals. I then set up an appointment for a second opinion at a different hospital locally in my state of Indiana.
At our second opinion consultation, the MFM could only tell us less than the first specialist. They couldn’t even confirm that our daughter had CDH. They gave us even less hope. I left that appointment feeling so frustrated, angry, and sad. I was beginning to feel like there really was no hope for my little girl. The first hospital seemed to be giving up on my little girl without her even being born yet. Even going so far as to say that there was a chance they wouldn’t intervene at her birth and would just let her pass. The second hospital just didn’t know.
At this point, I was obsessed with CDH. I kept researching, reading, crying but wasn’t ready to just give up. I kept running across the name of a specialist in Florida named David Kays and the original Real Hope for CDH website. I then started researching Dr. Kays specifically and read his research articles on CDH, and I found families who had shared their stories. In my desperation, I started reaching out to people who had gone to him for their children’s care. Everyone I spoke with was so incredibly supportive and helpful. They graciously shared their experiences and highly recommended we consult with him. I wanted so desperately to at least talk to Dr. Kays, but reality was hitting me hard. The fact was I live in Indiana, and he practices in Florida. I just didn’t know how on Earth we could make a trip to Florida possible, let alone potentially relocate there. But every appointment we went to at our MFM was becoming more bleak than the last. I couldn’t take it. Then at the suggestion of a friend, I contacted Tiny Hero and poured my heart out. I spoke with Annie that night I called, and she graciously shared her story. By the end of that phone call, I finally felt the inkling of hope.
Tiny Hero made it possible for my husband and I to travel to John Hopkins All Children’s Hospital for a third opinion with Dr. Kays. At this point, we literally felt like this was our last hope for our daughter. The first thing Dr. Kays asked us when we met was, “What is your daughter’s name?” And we said Eleanor. He’ll never know how much that question meant to me. This was the first time a doctor seemed to genuinely care about our child. For the first time, we finally had some answers about Eleanor’s condition. He explained that she had right-sided CDH. He estimated she had 30% of her lungs, about 30% of her liver up, and some intestine and bowel in her chest. After that consultation, it was clear that he would do whatever it took to save her life, and there was no doubt or question in our minds that All Children’s was where we wanted to be for Eleanor and with help from Tiny Hero we made the relocation to Florida happen.
Eleanor was born on September 1st, 2016 on the heels of a hurricane, and she was the most beautiful little girl I had ever seen. Then she was whisked away to begin her fight. 4 days after her birth she had her repair and the doctors had found that she actually had 60% of her liver up, all of her bowels and all of her intestines in her chest. She did indeed have 30% of her lungs that they had estimated from the MRI. Eleanor’s hernia was unique in that the diaphragm split down the middle on her right side, so Dr. Kays was able to repair her hernia by joining her diaphragm back together without a patch. She remained intubated for a total of 13 days and was held for the first time at 17 days old. After 54 days in the hospital we were able to take our daughter home.
There are no words that could truly describe what it’s like to be a CDH family. The heartache, the worry, the fear of the unknown and the known is overwhelming, but our journey has brought us closer together as a family. Our daughter has given us precious time together we wouldn’t have had otherwise. She has given us new experiences, precious friendships, and a new perspective on how precious life is. And Eleanor’s unwavering smile and strength throughout her fight has been nothing short of inspiring. She truly is my tiny hero.