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Abigail

Hello! I’m Abigail, I was born with VACTERL syndrome. My mother did not know I had any medical problems until after she was in labor. It was then that she found out I had spine and rib problems as well as duodenal atresia, a stage four hypoplastic thumb, a VSD, and the possibility of Down’s syndrome. I was born ten weeks premature and weighed in at 2 lbs, 4 oz. When I was 18 hours old, I was taken by ambulance to UMPC Children’s Hospital of Pittsburgh. When I arrived I was quickly admitted to the NICU where I spent 2 days before I had a surgery to correct my duodenal atresia. After the surgery I spent about six months in the hospital. That was when my VSD, thumb, and skeletal issues were officially diagnosed. Those six months were probably the worst from a medical standpoint. I had aspiration pneumonia. I had an NG tube (but I was a very smart baby because I kept pulling it out!). After the surgery for the duodenal atresia, I was given an NJ tube that delivered nutrients directly to my intestines. I also had a central line for medication that unfortunately became infected, causing me to become septic and have a seizure. After my sepsis was resolved, the doctors decided to put in a G tube, and I finally started to grow and develop normally. 6 months later, I was finally ready to go home with the G tube still inside me. I was brought back in 6 weeks for a checkup where all was well, except for the fact I still couldn’t swallow. I took a barium swallow test shortly after that revealed I had an H-type tracheal and oesophagal fistula. Within two weeks, the fistula was surgically corrected, and I was good as new. The only surgery I had after that was to correct my stage four hypoplastic thumb, but that didn’t happen until after I was a year old. After a couple of months had passed, I had the hand surgery which was successful! Although my hand does not look ordinary (it looks like I’m missing a pointer finger and the other ones shifted over), I have learned over many years of occupational and physical therapy how to use it.

 

My medical abnormalities do not hold me back in life. Many people don’t know the full extent of what I’ve been through. They only know about the things they can see, such as my hand or the scars on my stomach. Even then there are very few things I can’t do (such as right-handed layups in basketball). There are also a great many things I did accomplish: I am one of the starting five on my basketball team; I play second and first base on my softball team; I am a camp cadet graduate;I am a former reading competition captain; I am a future EMT and psychiatrist; I am a babysitter; I am a big sister; I am an honors student. I am successfully living with VACTERL syndrome.

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