Ella’s Story - Congenital Diaphragmatic Hernia (CDH)
I went into my 20-week anatomy scan oblivious to how my world was about to change. We completed the ultrasound and then the doctor came in and asked if we had a family history of congenital defects. I knew at that moment that something was wrong with my baby. The doctor told me about something called “Congenital Diaphragmatic Hernia” and explained that it occurs when there is a hole in the diaphragm. He said that it was very rare and that most children did not make it. Not knowing any better, I believed there wasn’t much hope. Next, he went over options of where I could deliver and I chose Johns Hopkins of Baltimore. He told me not to be surprised if they mentioned termination and wished me luck. To make matters worse, our diagnosis came right at the beginning of the COVID pandemic, so I was alone for all of my appointments.
On 12/01/2020, I went in for a scheduled c-section and Ella came out screaming. I didn’t get a chance to see her before they swept her away for treatment, but the nurse took some pictures for me. A bit later, the doctor taking care of her came over and said they would monitor her, but they suspected she would need to move to the PICU and start ECMO. After they took me to recovery for a while, I was able to see her in the NICU before she left. They said they had given her the highest doses of sedation medication and she was still looking around. That is when I knew she was a fighter! Two days later, she went on ECMO and had her diaphragm repaired. They discovered during surgery that her hernia was different than most. Her organs grew in a sack and they were able to use the lining of the bag to repair her diaphragm. She also required a patch for the lining of her stomach.
She was on the ventilator for 25 days and came off on Christmas! She healed from surgery and was doing well, but like most CDH kids, it always seemed to be one step forward, two steps back. She has a lot of struggles with eating and after trying NG, ND, and NJ tubes, they suspected she had gastroparesis. In February, she left John Hopkins in Baltimore and relocated to a pediatric rehab hospital to feed and grow. Every time she would have anything in her belly, she would gag and throw up. After the rehab hospital couldn’t place the NJ tube back, they decided to send her to Johns Hopkins. There they did everything in the book to figure out what was wrong. After much hesitation, I agreed to the GJ tube surgery. I am so thankful I did because they found a kink in her bowel that prohibited anything from passing. She came home in July and had been growing on target ever since. She has now had the GJ removed and has a G-tube. Currently, we are working on oral feeds. I am encouraged by the fact that she will eat little bits here and there and will take fluids by mouth.
She is now followed by the Kennedy Krieger Institute’s CDH clinic and they are always amazed at how far she has come. I fought hard for my little girl all these months and will continue to do so. I questioned them, brainstormed and spoke up when needed. I was not afraid to pull everyone in and advocate for family meetings when I got frustrated. I was lucky enough to have another family with a CDH kiddo there in the hospital near us. It was so nice having someone who could relate to the frustrations of the journey. My sweet Ella turned one this month and I am forever grateful to be her momma. She is truly a blessing and I am happy to have her here with us all today!
