Empress’ Story - Congenital Diaphragmatic Hernia (CDH)

Hello, my name is Destiny and my baby girl, Empress, was diagnosed with Congenital Diaphragmatic Hernia (CDH) during pregnancy. I have two other children that were both born strong and healthy, so this diagnosis definitely came as a surprise. Pregnancy with a child that has CDH was challenging. The doctor, who didn't realize there was hope, continuously asked if we wanted to terminate, but I denied each time. I knew that Empress would impress us all.

At 32 weeks, my water broke even though I was not dilated. I remained in the hospital for a month and Empress was born on November 16, 2020. When she made her entrance, she was silent. I barely had a chance to see her before she was swept away to the NICU. At that moment, my heart broke and I didn't know what was going on. When I finally made it to my room, they updated me on her condition, which wasn't great. Even with ventilator support, she was struggling, so they had to move forward with ECMO. It was a very scary and helpless feeling. I am used to making my children feel better when they hurt, but this was different. I could not hold her or soothe her in the ways I was used to. She was hooked up to all these machines and on so much medicine. 

During her stay, we had a lot of ups and downs. At one point, her ECMO machine was not working and they had to change it out. They prepared us for the unthinkable, but thankfully she pulled through. Empress stayed on ECMO for 4 weeks and the doctors were not hopeful that she would ever come off of it due to her condition being so bad. However, when they took her off, she killed it! She definitely did things in her own time and in the way she wanted to do them. She continued to fight hard, but we knew she was not out of the woods just yet - she still needed to have her hernia repaired.

The surgeon was not sure how she would handle the trip to the operating room on repair day but they got her in and out successfully. From there, my baby has handled her CDH journey amazingly well and was discharged home on March 5th. Seeing what she has been through and how far she has come never gets old! She will be one in just a few days, and we are so thankful for her amazing surgeon and everyone involved in her care. 

My best advice for new parents is to stay hopeful! Believe in your baby and the power of prayer. Even if someone recommends termination or does not have hope for your baby, know that God always gets the last say. Keep your head up!