About a week after we went to a follow up appointment where we were told that we needed to go see a specialist in Syracuse because what we were told to be the "boy parts" may have been mistaken as his intestines.
Upon going to The Regional Perinatal Center in Syracuse, about 1.5 hours away, we found out that it was true. We found out, after multiple trips, that he was diagnosed with OEIS Syndrome, also known as Cloacal Exstrophy. http://www.chop.edu/healthinfo/cloacal-exstrophy.html
We had to continue to go to weekly appointments and after learning more about our situation we were told he would need multiple surgeries after birth the correct the defects. After our doctor had spoken with his surgical team we were told that they were not comfortable performing the surgeries that he would need, so we were referred down to the Children's Hospital of Philadelphia.
Jayme was 27 weeks along when we began our trips to Philadelphia. It was around 6 hours, one way.
The experience was rough, learning about OEIS and that it only happens to 1 in every 250,000 births. We tried to keep our hopes up. We learned that Kaiden had part of his bowels out, his bladder was split in two halves and part of his large intestine all were exposed on the outside of his abdomen. This news was devastating to our family.
We continued to make weekly appointments to Syracuse and Philadelphia for monitoring and ultrasounds. One of our appointments, Jayme had a amniocentesis done to confirm that we were having a boy because of the exstrophy, the ultrasounds made it hard to see what we were having, it was confirmed, yes we are having a boy.
After consulting with the doctors and surgeons we were told that we needed to relocate to Philadelphia once Jayme reached 26 weeks. This is because they knew he would be coming early.
On week 33, Jayme was feeling some pains so we rushed down to Syracuse to see what was happening, she was in labor. We were shocked, we knew from what the doctors said that he would be coming early, but not this early. We were suppose to deliver in Philadelphia at the Children's Hospital but those plans went out the window. He didn't want to wait any longer. On August 17th Kaiden Joseph joined the world at 10:31 AM. Jayme got to hold him for a brief 10 seconds before he was rushed up to the NICU where they needed to tend to his OEIS and began monitoring him. He weighed 4 lbs 8oz and was 17 3/4 inches long.
The first day he had a tube put down into his stomach, this was needed to keep his stomach empty and decompressed until surgeons were able to evaluate his exstrophies. He was not allowed to eat and was put on IV right away. We were finally able to hold him the next day.
At two days old he was flown down to CHOP (Children's Hospital of Philadelphia) we immediately went in the car and relocated ourselves to Philadelphia, after arriving here multiple teams came to look at the affected area and explained what we were looking at.
Kaiden had his first surgery on August 27th at 10 days old. This operation was to move the exposed bowel and intestine inside, making a location on the left side of the abdomen for an ostomy and bringing the two halves of the bladder together into one.
We have had some ups and downs since the operation with his bowel not working and are still working through this, we are currently staying in Philadelphia still.
We are seeking help for Kaiden's medical costs, travel to and from home, living expenses while staying in Philadelphia PA and medical supplies that we will need at home for care of his exstrophy and ostomy once we are able to come home. Kaiden will require follow up appointments once we leave CHOP and will still need multiple surgeries for the exstrophy and reconstruction of his lower areas including his spine. These surgeries will happen as he grows.
Thank you everyone, we couldn't have made it through this without the friends and family that we have! We love you and God bless!
For pictures of Kaiden and some updates:
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