At my 20 week anatomy scan my local MFM informed us that we will be going to CHOP and that our baby boy has something called a Congenital Diaphragmatic Hernia. My husband and I both just went numb. When we walked out of the ultrasound room I could not hold back the tears. An appointment was scheduled for 2 days later in Philadelphia. We had to come back to get some blood work done so we went to a nearby restaurant. We knew our baby boy was a fighter. Our local doctor told us our Charlie had a mild case of CDH and only had his stomach up in his chest cavity.
Charlie is our miracle baby boy. My husband Tom, and I struggled with infertility and had to go through IVF in order to conceive our Charlie. During all our ultrasounds he was so active and his heart rate was very healthy. Going through IVF I had weekly ultrasounds and anti-rejection IV treatments up until 12 weeks gestation. We did everything that the doctors recommended. I went through numerous procedures and tests and received 1000's of hormone injections and treatments. Our first trimester was supposed to be the hardest. With all the stress of IVF treatments and intermittent spotting nothing else could trump the stress of the first trimester. Boy, was I wrong.
Two days later we took the 4 hour trek to CHOP to have our initial testing done which consisted of an MRI, ultrasounds and ECHO. When the ultrasound tech labeled the liver up in his right chest I lost it. We went from having a mild case of CDH to having severe case. He only had about 30% lung capacity at our first visit and everything was up in his chest cavity. He was given a 60% chance of survival if born at term and at CHOP. Dr. Johnson went over the test results. My parents, Tom and I could not hold back our tears. I had an Amnio done to eliminate any genetic issues. Everything came back perfect from the Amnio. We were instructed to come back on January 23, 2018 to have more tests and have the FETO surgery completed.
Fast forward a month and numerous tests later we found out that he had taken himself out of the severe group and no longer qualified for the FETO surgery. We were all prepared to relocate and had packed our lives up to live in Philadelphia for months until our Charlie could come home. We were instructed to go home until March 1st, our next rounds of test. Unfortunately for us the upturn in his prognosis made a drastic change for the worse.
February 17th I celebrated my baby shower with all my friends and family. We loaded up all his toys and accessories and went home that night. That same night I could not sleep and was having a lot of discomfort. That morning I called my local doctor and he told me to rest and if it does not get better to call him back. Unfortunately it did not get better. At 2pm that afternoon, after a long, very quiet drive up to the hospital my husband and I were told that at 30 weeks and 3 days I was 6cm dilated with my baby boy. We fought to be airlifted to CHOP but that was not an option. We fought for them to try to stop the labor but they said it was not possible. They sent us via ambulance to a more advanced hospital in the area. By the time the EMT's came I was void of all emotions. I knew that this meant that my baby boy’s chances were very slim.
As I was brought into the hospital all I could hear were nurses and staff asking "Is that her? Is that her?" I showed absolutely no emotion. They hooked me up to all sorts of machines and my family came to see us. They broke my water sometime late in the night and I tried so hard to deliver him naturally to help push some of the fluid out of his little lungs. Unfortunately he was not coming out. Sometime around 7:30am on the 19th I was told that I will need to go into an emergency c-section, at that time I started hyperventilating. As they dragged me cords and all out of the room, I felt him kicking and all my consistent, rapid contractions, my epidural had failed. As they were poking me with numerous needles all over my body I felt him kick for one last time as they gave me general anesthetics.
Charlie was born via emergency c-section at 7:44am, on February 19th, 2018. I was in a medically induced sleep for 80% of his life. His NICU doctor forced my doctors to wake me up fast and much earlier than usual so I could hold my baby boy. I woke up to hear his NICU doctor’s voice telling me that he will not make it. In my dazed mindset from the anesthetics I knew and all I could do was whale in pain, never-mind the physical pain of having a c-section. For 15 minutes I held my baby boy in my arms as he gained his angel wings. We have a total of 82 total pictures of our baby boy, Our Charlie. His lungs were just so small and his heart was just not developed enough. I gave my Charlie one very long kiss before he passed.
No child should ever be born which such a devastating health issue such as CDH. No parent should ever have to say hello and goodbye to their child at the same time. I know our Charlie is looking down and saying "Look down there that is my Mommy. She could not save me but she is so strong and would do anything to prevent the pain and suffering I endured to be experienced by any other baby."
