Emma’s CDH Story
On July 5, 2022, I went into the hospital to have my third and final child via scheduled C-section. My husband and I were excited, nervous, and could not believe we were about to be the parents of THREE girls. My pregnancy was pretty normal, with no findings of concern on ultrasound or bloodwork. We had no reason to believe that our sweet baby girl was about to be in for the fight of her life.
Upon her delivery, Emma could not breathe and made no sound. Not even the slightest cry. I knew right away that something was not right with my baby. The OR team quickly took her away to the NICU. My surgery was finished, and I was taken to recovery. I remember it being the worst feeling in the world, not knowing what was wrong with Emma. Soon after, a nurse came to my bedside and explained that our daughter had Right-Congenital Diaphragmatic Hernia (CDH) and she would need to be transported to Arkansas Children's Hospital, as surgery, among other treatments, would be required. The Angel One transport team stopped by my room with Emma before taking off. We said our goodbyes and my husband left to follow the crew to ACH.
I spent the next two days begging and pleading with God to please let my baby be okay. I discharged as quickly as anyone would let me to go see Emma. The sight of such a sick baby was absolutely nothing anyone could ever prepare a mother to see.
Emma had her repair surgery, patch required, at four days old. The day after her surgery, she took a downhill spiral and required ECMO for four days. This was the scariest sight, but it truly helped save her life.
She was intubated for a total of 21 days and then required CPAP and high-flow O2 for about another month. Her NICU stay was a total of 94 days. Emma never got the hang of taking a bottle or breast, so we opted for a G-tube to get her home. Her pulmonary hypertension was well controlled with sildenafil and corrected itself rather quickly.
Emma is now off of all medications and eating some of her meals by mouth. We still use her G-tube about three times per day for extra calories. She is so full of life and truly one of the strongest girls I know. We are thankful for our baby girl and would do this crazy all over again for her.
The hardest part of our NICU stay (once she was less critical) was juggling two other children and traveling to and from the hospital each day. It was a constant balancing act for our family. Emma's sisters were so brave through all of this as well. Since we had no idea about her diagnosis ahead of time, nothing was prearranged or planned. We were blessed with friends and a church family that helped us financially.
I am thankful for organizations that support and research CDH, as it is such an unknown congenital defect. I hope that by sharing Emma's story, we can be a light and encouragement to other families who are going through this difficult time.
