The majority of people like to have a plan. According to Wikipedia a plan is, “typically any diagram or list of steps with timing and resources, used to achieve an objective.” Before Bronson was born we had a plan that went something along the lines of paint the baby’s room, set up furniture, buy clothes/supplies, time contractions, don’t wreck the car with water breaking, get to the hospital on time, have baby, bring baby home and have endless nights of no more sleep. Most new parents have the same agenda. However, in our case our plan changed quite dramatically once Bronson was born and we’ve been at the mercy of Doctors and the Health Care Team to make a new plan that, in the end, will have Bronson home with us.
A while back I received an email from a lady named Cindy. Cindy had originally heard about Bronson, when he was first born, at church. Weeks later she was googling about liver transplants and found my blog. She is expecting a little boy. They found out a little while ago that her son, due in November, has a urea cycle disorder called Ornithine Transcarbamylase Deficiency (OTC), which is genetic. The only cure for OTC is a liver transplant. Apparently, this is the first case Sick Kids has had where the medical team is planning a liver transplant before the baby is even born.
Once the baby is born he will be placed on the liver waiting list with the Trillium Gift of Life Network (they oversee all transplant waiting lists in Ontario) and then they have to wait for the call that they have a liver. If they are able to find a live liver donor before the baby is born they may potentially be able to have the liver transplant done shortly after he arrives. The problem with OTC is that the body’s ammonia isn’t properly disposed of, and as the ammonia levels rise it causes permanent brain damage.
The parents have met with numerous Doctors from Sick Kids and were given a Treatment Plan (click to see plan) for when the baby is born. They aren’t sure if they are able to find out the baby’s blood type before birth and that may hold up the transplant process a little bit until the baby is actually here. The baby, according to the parents blood types, will either have Type O or Type B blood and will hopefully will be able to have a donor in place before the he arrives so the transplant can be done as soon as possible. Once this baby has a liver transplant he will be able to process proteins and ammonia properly and will be able to life a healthy life.
I had the chance to meet Cindy this week while she was in Toronto for appointments. It was nice to be able to chat with someone who is also going through the process of liver transplant. Although, it would be wonderful if our families didn’t have to go through this journey with our kids, but we can’t change that. For both of our families, planning comes down to doing anything we can do in order to get our boys home from the hospital healthy.
Cindy has a blog, Counterbalanced Coquette, where you can follow their story and get in touch with them if you would like more information about being a live liver donor. Being an organ donor is VERY important to families who are waiting to receive a transplant. In Ontario you can become an organ donor by simply going to Be A Donor.