- Posted January 2, 2013 by
This iReport is part of an assignment:
How did pregnancy change you?
And Baby Makes Four
CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000.
We were told that abortion was the most reasonable thing to do. I could not understand why they would suggest such a thing. I told them that I was not about to do that without checking all our options.
We went home to do research and there was not much in the way of information. Until I found the group CHERUBS. Finally, a place where I could find survior stories and the hard sad stories of death. WHY? WHY?
We continued to work with different doctors at the university that helped us explore ideas. Some only wanted us to abort and forget about having another baby, some wanted to test our other kids, and some had real feelings.
While the pregnancy continued, I brought information to the doctors that I got from CHERUBS, they were impressed that I had found a group to walk with me. CHERUBS never pushed me one way or another, but just knowing that I was not alone made it an easier path.
On February 27, 2007, I had my first c-section, expecting a baby that was no bigger than 3 pounds and not longer than 10 inches, since that is what the university hospital claimed that most babies with CDH would be at, ALLISON FAITH was 5 pounds 6 ounces, and 18 1/2 inches long. She was tubed before she could even take her first breath, while the OR was filled with sounds and teams of doctors, I never got to see her except from a camera. My husband was rushed to the NICU to be with her as they started all these tests on her. I was in a cold room all alone and no one would give me any answers. Once I went to recovery, I was greeted by nurses and they were so happy with the news of a baby girl. But once I told them what she had, the cheers stopped. I had nurses praying and holding my hands while I cried. Then 4 doctors all in white showed up, to tell me that they could not do anything for her. I asked them to bring my husband to me, but they walked away. I rang for the nurse to take me to the NICU so I could be with my husband and children. Once I got there, I only saw saddness and tears. We all were placed in a room, and told that she only had one lung and her heart was not working right. We would have to be on a waiting list for who knows how long for a heart and lung transplant, besides the hernia surgery she needed. As a family we hugged, cried and prayed. We knew that for us to wait for the perfect transplant while our ALLISON FAITH was living on a machine, was not life at all. We requested that she be removed from the machine and brought to us. We all had special time with her and she lived for 7 long hours to pass away in the arms of her father.
The next day, I was about to be released, when a new set of doctors came into my room. They told me that I had a 25% chance of CDH again if I were to get pregnant. My 3 other kids stumbled into the room and the doctors asked if they were all mine and my husband was the father of all of them. I think my jaw dropped. I said, yes they were. They stepped out and chatted and came back in, they asked if I had ultrasounds done when I was pregnant with them, I told them again yes. I finally asked them to please just leave and I would be in touch with them.
5 months later I found out I was pregnant and not only was I pregnant, I was having twins. I decided that I would let the university do the ultrasound and they all jumped at the idea of me deliving twins with them. I told them that I would NOT be having my babies with them.
Excatly 1 year to the DAY on February 27, 2008, I had Morgan Faith and on the 28th I had Mallory Hope.
I am still a very active member of CHERUBS, while I might not have a survior story, I have a story that provides hope that not all pregnancies after CDH will have CDH.
Did you know that CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. 1600 babies are born with CDH every year in the United States. Globally, a baby is born with CDH every 10 minutes.