CanadianCindyB

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011.  We had 15 days with him.  This is a summary of week 2. If you havn't read my recap of Week One , read it first. Mike and our daughter left on Sunday night to go home, while I stayed in Toronto.  I already had a hotel room booked at the Delta Chelsea for this week, since originally I was supposed to have baby on Nov 1st by planned induction and I had booked it as a place for Mike to be able to sleep for the first couple days before I would be discharged, and then for me to join him.  The hospital and the hotel are only a block apart from each other which is really helpful. The weekend had been hard, as I described in the previous post, with dialysis lines inserted, dialysis started and stopped, and ammonia levels spiking high. They had also attached Kyle up to a fancy EEG machine over the Sunday and Monday for 48 hours to monitor for the potential of both convulsive and non-convulsive seizure activity from...

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011.  We had 15 days with him.  This is a summary of the first 7 days. As many people reading this know, I was pregnant with a baby boy affected with a severe mutation of Ornithine Transcarbamylase Deficiency, which means that he can't metabolize protein properly.  Protein gets changed into ammonia, but it doesn't get past that point in affected children.  The ammonia builds up, causing potential brain damage, and eventually causing the organs to shut down. We were going to do medical treatment to be followed by a liver transplant.  We weren't convinced we would get to the point of transplant, because the treatment would be difficult to manage.  But we were willing to try.  We were doing it day by day.  We were going to try, and if he made it, we would go buy everything that was needed. I was due Nov 14, or Nov 11 based on ultrasound.  I've had two previous full term pregnancies.  My...

I have some important news to share.  All blood types can now apply to be a living liver donor towards our baby.  Previously only B or O could apply, and they are now opening it up to A and AB donors.  Positive/negative blood type does not matter. This is called "ABO incompatible matching", and is not typically done.  Toronto has done it with adults, but never with children.  When we met with the transplant team a couple of weeks ago, they had mentioned that they were going to add in the possibility of using ABO incompatible livers from cadavers if they came in to bring up the odds of finding a liver.  This is only done in rare cases.  Our next question to them automatically became, "If you are willing to do that, what about incompatible blood type living donors?"  They mentioned that they had not done this at Sick Kids before, but would talk it over with the living donor co-ordinators at Toronto General as well as the main surgeon (who was in s...

 Some random facts about liver transplant: There are typically between 20 and 30 children on the waiting list for a liver at a time just at Toronto Sick Kids hospital. Toronto and London are the two transplant centres in Ontario. No cadaver livers came into Sick Kids hospital during July or August this year, but two became available this past weekend resulting in transplants (including the other OTC case I wrote about earlier). The waiting period for a cadaver liver is very random. The first living donor transplant in Toronto was performed in 1996. Toronto is the largest, most experienced living donor transplant centre in North America. The list for people needing transplants in Ontario is maintained by the Trillium Gift of Life program.  They maintain a publicly accessible list that tells you how many people in Ontario are on the waiting list for organs at a time.  At time of writing this, there are 235 people in Ontario waiting for a liver transplant ...

We've been waiting prenatally to see what baby's blood type is in order to be able to plan a bit ahead for the needed liver transplant. Baby's blood type is B!!  You might ask why I'm excited to hear this.  We knew that the blood type would be either O or B, based on the blood types of myself and my husband.  It was a 50/50 chance either way.  Here are the statistics on why this is good news. (The +/- factor has no influence on liver donations, and the lab report didn't specify +/- anyway.) In Canada, 46% of the population have an O blood type (39% O+, 7% O-). In Canada, 9% of the population have a B blood type (7.6% B+, 1.4% B-). Being B, he can receive a liver from someone who is either O, or B blood types.  It slightly raises the number of potential people that he can receive a liver from than if he was O, since O can only receive a liver from another O. From the opposite perpective, someone who is a B blood type, can only give to someone who is B o...

I've had a few people ask me what the process is to be tested to be a donor for our baby's needed liver transplant due to his genetic condition of Ornithine Transcarbamylase Deficiency.  I had posted a little bit about our meeting with the transplant team earlier, but not the actual application process. If you are interested in being a potential donor, you must be either O blood type, or possibly B blood type. Positive/negative doesn't matter.  We are currently waiting on results to find out whether baby's blood type is O or B.  If you are O, you can be a donor no matter what blood type the baby is.  If baby turns out to be B blood type, then B blood types can also be donors. For other info, see the same link as above... Meeting With The Transplant Team.   You will see that currently they would really only consider people under 150lbs.  However, if you are bigger than this, and are still interested, please keep the thought...  If baby grows well ...

After meeting with the transplant team a couple weeks ago, one of the big pieces of missing info was "What blood type is the baby?"  By knowing the blood type definitively, it helps the process along by knowing who can and who can't be a donor.  If we know ahead of time, they can put baby on the transplant list probably as soon as I'm in labor, or right at birth.  It also helps potential donors know if they would qualify or not. I knew they had taken extra amniotic fluid as a just in case measure when I had my amnio done back in June.  I mentioned this to the transplant team as a potential source of information for blood typing, and that I would have genetics look into whether blood typing could be done in this way. It took some research, but it can be done!  Sick Kids has found a lab somewhere in New York that will process the extra amniotic fluid to find out the blood type definitively.  I think this is pretty cool on a theoretical, scientific, resear...