September 26, 2010 was the day our son Deacon Sunshine-Parker was born with gastroschisis (one or more organs outside of the body). We were told this birth defect would show up at the 20 week ultra-sound. The only thing they weren’t able to tell us through ultra sound is how serious this condition could turn out to be. When Deacon was born, he came 6 weeks early and we were only able to hold him for a couple of seconds. The team at the Royal University Hospital quickly rushed him off. While we were waiting we received a phone call to meet up with the doctor and we had to make a very important decision. They had found our son’s bowel was starting to break down and deteriorate. We had two choices.
The first option was to put the bowel back in which would give our son about 10 days to live. The second option was to remove the dead bowel which would leave him with about 10cm, not enough to survive. Deacon would require being on TPN (total parental nutrition). As we became more educated about TPN, we realized it was something Deacon needed to get him strong enough to be listed for a transplant. However, it could also lead to liver failure.
Our journey in the Saskatoon hospital lasted three and a half months. We were told that we’d only be in Edmonton for 4-6 weeks but our stay turned into a year and we lived at Ronald McDonald house during that time. In the meantime, Deacon’s liver enzymes were very high and his liver was failing. We found out that there was a multi-visceral transplant (more than one organ) Deacon could receive to save his life. Edmonton’s team told us that if Deacon received the organs and they were a match, he would be the 5th North American ever to receive it. After multiple surgeries to buy time, on March 2, 2011 Deacon was put on the list for transplant and a week later we got the call to confirm that there was a match. We gratefully accepted. The surgery would take 12 hours. When Deacon got out he was finished 4hrs early but the procedure went smoothly and we were happy.
By the end of April we were released into the community. We feel blessed to be sitting at home telling our story because the expectation was we would be in hospital 1-3 years. Still, every now and then, we have to be re-admitted for things such as dehydration, infections, viruses, line replacements and rejection although Deacon has only rejected once. The transplant team in Edmonton says Deacon is their most successful multi-visceral transplant patient.
We couldn’t have gotten through it without the David Foster Foundation. They have truly been wonderful to us. While Deacon was in the hospital we received money for living necessities and help with vehicle repairs. Because we were totally isolated, our family had not been able to see Deacon in a long while. The David Foster Foundation flew our immediate family down on more than one occasion which was great because to us, having family around was so important. It really is an amazing foundation and I hope it brings others as much hope as it brought our family knowing there is such a foundation out there that supports transplant families. Thank you for everything you have done for us. David Foster, you truly are amazing.
The Sunshine-Parker family, Anna, Shane and Deacon