CanadianCindyB

October 15th is National Pregnancy Loss and Remembrance Day. We are coming up on October 24th, which is what would have/could have been the 1st birthday of our son Kyle.  He died at Toronto Sick Kids last November from an E. Coli infection while waiting for a liver transplant, which was to be the treatment for a genetic metabolic disorder called Ornithine Transcarbamylase Deficiency aka OTC Deficiency. It's an extremely difficult genetic situation to manage with drugs until the point of transplant. But the doctors were hopeful. They were willing to try everything   possible for us. It was the very first time that Sick Kids was dealing with a case where it was known before birth that a liver transplant would be needed.  In order to have him on the transplant list immediately after birth and to help search for a living liver donor, we found out his blood type before being born, through the extra sample of amniotic fluid during the pregnancy.  There were high risk ...

This past Saturday, the Globe and Mail newspaper had an article regarding PGD - pre implantation genetic diagnosis.  I plan on writing more about that topic in the future, but in the meantime, one of the statistics that was in the article was that approximately 1% of the live births in Canada were conceived via IVF - in vitro fertilization.  The 1% quote is pretty close.  In 2009, there were 380 863 births in Canada , and 3160 of these were via IVF based on the statistics stated below.  This is an overall rate of  0.83% of births were via IVF, which can easily be rounded up to state approximately 1%. I know a number of people who have used IVF in order to get pregnant, but I had never considered the overall percentage before.  I'd share one of cute pictures of friends children who have been conceived by IVF, but even for those who are open about the conception, it feels a little too public to request permission to use a picture. One in one hundr...

We have been very open and public about our journey through our pregnancy with our son Kyle (Oct 24 - Nov 8, 2011).  His life has not only affected us as a family, but our extended family, friends, acquaintances, doctors, hospital staff, and many people who I have never even met.  Not only did it affect these people, but his life created a lot of conversation right from the very beginning.  Some people didn't understand why I didn't abort immediately after finding out he was affected.  Others were incredibly hopeful for the medical treatment of a liver transplant that was available this time, that wasn't a possibility eight years ago when we went through this before.  After his death, many have struggled with the "How could this happen," either from a medical or theological perspective, or both.  Awareness about urea cycle disorders and awareness about organ donation have occurred.  A new study on hepatocyte transplant (injection of healthy liver cel...

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011.  We had 15 days with him.  This is a summary of the last few days. If you havn't read my recap of Week One , or the recap of Week Two , read them first. We spent the day at Sick Kids on Sunday, including our daughter.  The nurse that day was the same nurse who was there the very first day Kyle was born and brought over from Mount Sinai.  She arranged to have Natasha be able to be let in to see Kyle since she wasn't officially allowed to on the PICU floor since she was under 12.  I'm very thankful she did this. This was the last day that he was responsive at all...he would still grip your finger if you put it into his hand. They did neurological tests on Monday and Tuesday.  MRI, ECG, and a special type of ECG where they put goggles on and flash lights, do hearing testing as well as physical testing and all of them showed absolutely no response to stimuli of any form.  We made the decis...

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...