Saturday, August 27, 2011

How to Become a Living Liver Donor

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 birth, and passes the 10lbs mark, then that raises the maximum weight limit for the donor. You could even submit your application in the meantime, and they would probably keep it on hold until baby reaches a bigger weight.

This is a link to the Liver Donation Manual.  There are a few things in it that don't apply to our situation - like the fact that normally they don't look at potential donors until the person is on the transplant list.  Since baby will be on the list immediately after birth, they are looking at the possibilities of screening donors now.  It's a very detailed document about the procedure!

Finally, here is a link to the Donor Health History Application Form. Where it asks for the recipients name, we are using "Baby Boy Babcock" for now, and he will be at Sick Kids. If you need any more info let me know, and I'll give you the number for the living donor transplant co-ordinator at Toronto General Hospital who looks after all this, and answers questions for those considering the process. 

Thursday, August 18, 2011

Living in Toronto Before Baby is Born

I had a call from one of my doctors yesterday to talk to me about my "labour and delivery plan".  As you probably know I had already said I do not want a planned c-section, due to a few different reasons.  The doctors are even more paranoid than I am about my not delivering in Toronto.  I had been planning on going down a few days before my due date as a just in case.  My four primary doctors (obstetrician, internist, adult metabolic geneticist and pediatric metabolic geneticist) between three different hospitals (Mount Sinai, Toronto General, and Toronto Sick Kids) have come up with a plan that they wanted to know if I would agree to.

Since it is imperative that I deliver in Toronto for the sake of the baby and getting the baby the medical assistance required immediately after birth, (an extra couple hours DOES make a big difference medically in this case), they want to absolutely ensure that I deliver in Toronto.  They would like me to be within the GTA starting at week 37 (3 weeks before due date).  Starting at week 38, they want me in the downtown core close fairly close to the hospital.  I don't need to be in the hospital or on bedrest, so they are looking at finding funding for me to stay at a hotel in the area during that time.  I will have to meet with social work to find out more about funding.

So...I need to think of who I know that I can stay with for week 37 in the GTA!  I will also need to put together a collection of books/movies for the time in Toronto.  I like Toronto, but the thought of being there by myself without anything specific to do for potentially a few weeks is a little overwhelming!  If I get a room with two beds at least maybe I can have friends come visit for a night.  My husband and daughter could come on weekends too.

If you have any suggestions of how I should fill my time, let me know!  Just don't say shopping...I don't want to be spending a lot of money!

Thursday, August 4, 2011

Testing Baby's Blood Type via Amniotic Fluid, and Other Stuff

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, research basis.  I need to fax back the consent forms later today.

A couple days ago, I had more appt's in Toronto, and afterwards I met with Angela, mom of Baby Bronson.  He just had a liver transplant a week and a half before, for completely different reasons than why we are, but it was nice to talk with someone about the liver transplant experience in and of itself.  Her baby is looking really well, and was moved out of (Pediatric) ICU later that day.  I had a little tour of the PICU floor, which is where we will be spending time after baby is born.  

At this point, I have no more medical appt's booked for another 3 weeks, unless something pops up.  I think this is the longest time without appt's since the very beginning of the pregnancy.  I will go down for a social visit with my mom and aunts one day in between though, as they will be heading down to Toronto from Northern Ontario to participate in the Longitudinal Study for Urea Cycle Disorders that we are all a part of.

On complete other topics, our house is really quiet this week.  We dropped our daughter off at overnight camp for the first time.  She is 9.  And she was super excited to go!  But the house seems really strange without her here.