Wednesday, December 14, 2011

Community of Love

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 cells) will be taking place for children with urea cycle disorders in Toronto because of the behind the scenes research that the metabolic genetics department did because of information I had them look into while looking into treatment options for us.

We have been overwhelmed by the generosity of others.  From the many people who looked into the possibility of being a donor, those who spent hours in prayer, those who helped financially, those who brought us flowers and meals and gift cards for meals both during our time at Sick Kids as well as in the weeks we've been home.  For those who have visited and listened and laughed and cried with us. For the heartfelt letters, that I will go back to read.  One family even provided us tickets to go see Mary Poppins the musical in Toronto as a way to reconnect as a family, which is something I would never have thought of, but was highly valued and appreciated by us.  People often ask what they can do for us, and I never have an answer.  Sometimes you don't even realize what it is you need.  A reconnection experience to adjust into our "new normal" was one of those things.

I'm not very good at accepting things from people, but I was told by many (my husband, social worker, pastor, etc.) that if someone offers something, I need to say yes, because 1) I need to and deserve to (I still have issues with the "deserve to".  I don't think I do, but I digress...) and 2) Because individually and as a community, people want and have the need or desire to help, and they can't help with allowing us to still have our son, so they help in whatever way they feel they can.  So when offered, I say yes, and we have been blessed and overcome by the generosity of others. 

I have noticed a few blog posts about Kyle's life in the last few weeks.  I thought I would share them here.

I was also interviewed during my pregnancy by Camilla Cornell, who wrote an article entitled "Gene Genie" in the 2011/2012 Winter Edition of the Pregnancy Special of  Today's Parent Magazine.  I can't find an online link at this point, but I'll put it in if I find one.  Look for this magazine at your doctors office.  They are distributed free of charge.

It is now 7 weeks since I gave birth to Kyle, and 5 since he died.  I went back to work after our son Colin 6 weeks after giving birth and his death (he lived for 3 days) and it was much too soon on an emotional level. I will return to work this time at the beginning of February, 15 weeks after giving birth, 13 weeks after his death.  It's amazing how much time is needed to process death.  I'm not sure that it ever fully gets processed.

The Last Few Days Nov 6-8 and Beyond

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 decision to let him go, and spent time with him as a family for a while before releasing him from the meds and breathing tube. He was 15 days old.

It probably sounds strange, but the fact that the tests showed complete instead of partial damage made it easier to let him go, since we didn't have to make a choice in any form, the choice was already made for us.

It is extremely frustrating to us and to the doctors that they were able to get the metabolic condition under control only to have the E. Coli infection take over to such a terrible extent.

We came home late Tuesday night (Nov 8), and made visitation/cermony arrangements today for Saturday evening. We then travelled north to Sudbury to have him buried next to his brother Colin who died from the metabolic genetic condition at 3 days old 8 years ago.  It is also the same graveyard where my two brothers who also died from OTC, the same genetic disorder, were buried. 

We are exhausted, and sad, but overwhelmed by the tremendous amount of support we have received from all around us.  It's hard for people to hear that a baby has died...especially when this is the second time we have gone through it.  I don't know why us, but despite the grief and loss and pain and exhaustion, we are feeling overall ok right now, mostly because of how much support we have had.

The doctors commented how impressed they were with our advocacy for Kyle right from the beginning during the pregnancy.  Because of some of the information I had gathered and presented regarding emerging research for the condition at the beginning of this process, Sick Kids will be starting a new experimental treatment study to help babies with the same type of condition as well as other urea cycle disorders in the future. Kyle was not physically big enough for this treatment study, but I am proud that because of him it will be started at Sick Kids to help others if needed.

The study is experimental, and a little controversial, but we were willing to participate if we didn't have a liver donor or cadaver liver lined up fairly quickly due to the severity of the illness in our particular mutation of OTC.  It had been arranged for us to be flown to Yale to be in the study if needed.  One of our big concerns was travelling to the States.  As we had said to our doctors in Toronto, "Being in Toronto is hard enough, but at least our family and friends can come visit.  To go to the States means noone will be able to visit (due to finances), and we aren't familiar with the doctors down there."

In case you are interested in this study, here is a link, and if you want other information, let me know, as I do have other links I could share as well.

We were also told that Toronto General was overwhelmed with the number of applications they had for living donor for liver.  I know of six who applied, and another six who we told to told off because they only test one person at a time and they were still going through the applications they had.  Hopefully this has raised awareness of the need for organ donations and will help other families waiting.

There is so much more to write, but I have difficulty putting my feelings into words in general, and particularly in this situation.