Aydan – Born 4 April 2013
My son Aydan was born on April 4, 2013. My pregnancy was a normal one we had all of the regular Dr. Appointments and they never found anything wrong with his development. I had a scheduled C-Section when Aydan was delivered he had the cord wrapped around his neck twice and the cord was tied in what is called a True Knot.
Aydan was born with a full Bilateral Cleft Palate and Pierre Robin Syndrome. He could not eat or breathe on his own so he was life flighted to Akron Children’s Hospital about 60 miles away. The life flight team could not get him intubated so after an hour one of the nurses had to hold his jaw forward so that he could breathe properly for the entire flight to the hospital. This all happened an hour after having a C-Section. I spent 4 days in the hospital I had delivered Aydan in without him. I did get to see Aydan and give him a kiss good bye before he was life flighted. He had his first distraction surgery when he was 4 days old. It was a success and we were able to move his jaw the 4mm it needed to come forward over the next 10 days. Aydan was still having trouble sucking on a bottle and we still had him on an NG tube to eat. We spent 6 weeks in the NICU. And when we were released he was still having feeding issues and was still on the NG tube. In July we were scheduled to have the distractors removed and a G-Tube placed.
When we went to have the final evaluation by the surgeon we were admitted for failure to thrive because Aydan only weighed 7 pound 5 ounces. That was under his birth weight of 7 pounds 7 ounces. We found out that the bottle feeding we were doing for 20 minutes each feeding before we started the NG feed was burning all of the calories for each feeding and the NG tube was to small for the 24 calorie Alimentum he was eating. We were in the hospital for a week before his surgery to try to gain as much weight as possible because surgery burns calories. He gained 100 grams in 24 hours it was amazing to see him smile for the first time during that hospital stay. He had his surgery and it was a success we left the hospital 5 days after his surgery he had to learn how to eat all over again and he had swallowing issues. Having the G-Tube in place let Aydan work in his feeding issues at his own pace and meant that he would still get all of the calories he needed in a day.
We had to feed Aydan continuously overnight for the next 3 or 4 months so that he could catch up on his weight. We had his Cleft Palate fixed that next January and by this time he was learning to eat baby food and table food. He was still being fed by G-Tube mainly. The surgery was a success once again and we left the hospital 4 days after his surgery. We also found out during this time that Aydan and myself have a duplicated chromosome in the 7th pair and that is what the Genetic Dr. thinks caused Aydan to be born with his Cleft Palate and Pierre Robin Syndrome. Over the next year Aydan continued to thrive and in 2014 we finally got his G-tube removed. We had not used it in 6 months and the surgeon felt it was time to remove it. He is still on pedisure 1.5 2 and 1/2 cans a day but Aydan is a strong and very independent 22 month old. We could have never come this far without our Cranial facial team of Dr. Murthy and our NICU Dr. Grow they helped us so much with understanding what was going on and what was going to happen with Aydan’s growth and development. Feel free to share my son’s story on both the website and Facebook page.
I hope my journey can help another mother that is going through what I have been through.