"She doesn't let CDH get in her way." - Savannah Grace's Story

In 2009, my best friend and I decided that we wanted to plan our pregnancies together so our kids could grow up together. My best friend found out that she was pregnant, then a month later I found out I was pregnant. Our journey was quickly saddened when she lost the child. We stuck by each other’s sides; she knew her time would come again soon. At 17 weeks, I invited her to my ultrasound appointment hoping to find out the gender of the baby. My husband couldn't get off work, but my best friend, sister, and oldest son accompanied me to the appointment. Everything started off normal. The image of my baby’s face, hands, and feet were perfect. However, we all became concerned when they kept going over the heart. The ultrasound tech asked us to hold on while she had someone else come in and review the images. I started to get very scared and asked for my son to leave the room. Then I asked if I could find out the gender (I really wanted a girl; I already had two crazy wild boys), but I said it wouldn't matter as long as the baby was healthy. Then the doctor came in. After 10 minutes of silence, he stated, “Your baby has CONGENTIAL DIAPRAGMATIC HERNIA (CDH), and her heart is shifted to the opposite side of her chest.” The only question I thought to ask was if it was a boy or girl? He said, “Girl.” Then he tried to continue to explain CDH. I jumped off the table and walked out. Thank God for my sister because she stayed and listened to everything the doctor had to say. He explained to her these babies don't tend to make it outside the womb. My husband and I thought there was no hope; I was determined to finish out my pregnancy and let GOD handle the rest. My mother on the other hand did her research and found Dr. Kays. We contacted his office and scheduled our first appointment. His success rate at treating babies with CDH was higher than any other doctor we researched. At 20 weeks, we made our way to see him; I was filled with hope and comfort.

First, was the appointment with the OBGYN doctor. The appointment didn't go how I planned. I was told Savannah had a severe case of CDH with a hole on the left side of her diaphragm causing her stomach, intestines, and liver to move into her chest cavity. Her LHR was 0.6 which meant her lungs weren't as big as they should be. I cried and cried until I had my appointment with Dr. Kays. He too agreed her case was severe and couldn't promise that she would survive, but he did promise to do whatever he could. I did find comfort in his promise. At that moment, I knew I was putting her life in his hands. I headed back home to prepare until it was time. At 28 weeks, I started contracting and was admitted into the local hospital. I feared she was going to come way too early. They tried hard to stop the contractions but nothing seemed to be working. Luckily, I wasn't in active labor. My contractions were brought on by the high amount of fluid surrounding the baby. She wasn't breathing in the amniotic fluid, and it became extremely high. I was released and quickly relocated to the Ronald McDonald House where I stayed on bedrest for the remaining time of my pregnancy.

On August 30th 2010, Dr. Kays brought my precious Savannah Grace quick into the world via C-section. She admittedly needed help to breathe and was put on a ventilator. I didn't get to see her, but later that night I was told they were preparing to do her repair surgery. Dr. Kays felt she was only going to be stable for this short period of time, and then she would go downhill. The surgery went great, but the next day she was put on ECMO. She needed to relax while the machines worked for her. After 11 days, she was off ECMO and switched to CPAP. When Savannah turned a month old, she was moved to NICU II where a lot of my worries started to drift away. I felt relief as I started to plan for her going home day. Then two short weeks later, I was told she need another surgery. She wasn't eating and had really bad reflux. The doctors described her upper GI to look like a pin ball game all curvy and crooked; it needed to be fixed. It was only two weeks later when Savannah was discharged. At two months old, I was bringing my baby girl home. She is now a very playful, smart and active 6 year-old. She doesn't let CDH get in her way. She has been hospitalized a few times for pneumonia and RSV, but besides all that, she has been pretty healthy.