National Infant and Pregnancy Loss Remembrance Day
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 pregnancy specialists to look after my health to keep my ammonia levels low during the pregnancy and birth, genetic teams from four different hospitals, and transplant teams from two hospitals. It had also been arranged for us to fly with him to Yale university hospital for an experimental hepatocyte transplant of liver cells, and to be flown back to Toronto if a liver were to come available while we were there.
Toronto General had more people apply to be a living liver donor than they had ever had apply for a child before. Apparently many children have no applicants at all, and their only chance is with a cadaver liver. At the last moment, only a few days before I delivered, they even decided they would be willing to try a transplant with the wrong blood type if one came available because of the severity of the situation. Again, this was something that had never been done with a child at Sick Kids, only with adults. Pretty amazing preparation work behind the scenes with all the teams co-ordinating together.
I'm still dealing with this death a year later. I'm angry. I didn't expect to still be angry after a year, but I am. I'd like to be rid of the anger. Unlike the doctors, we didn't actually expect our son to come home because we understood how hard it is to treat OTC. But in all the potential situations in my mind, one that didn't enter was that of an E. Coli infection! E. Coli? Really? Found in the picc line, it most likely got there from one of the many many staff not washing their hands properly. There were dozens of staff handling him each day... Its impossible to say which person caused it. The almost impossible to treat genetic condition was actually being managed successfully. Without the infection, he would have made it through to being transplanted. Long sigh. The infection was found on day 8. It became septic and caused brain stem damage. Test results on day 14 showed the infection had caused damage to the part of the brain that tells your body how to move. It had also resulted in no response to sound or visual stimuli. His last natural movement was on day 13. His brain had actually atrophied (got smaller) from one week before. All from the E. Coli infection, and not the genetic condition.
The treatment options they were using last year were very new, and as I already stated, we were extremely appreciative for the great attempts at treatment that were made. We know the treatment methods are new, because in 2003, our first son Colin was born with the same condition. So, yes, you read correctly, this was the second time we went through a neonatal death. Transplant was not a treatment option for infants then. We went through that pregnancy learning he was affected at around 20 weeks knowing there was no treatment. We did "care by parent" at the hospital, and he was held the entire time he lived. He was a typical newborn until the 40 hour mark, at which point his system started shutting down from poisoning. We had been told to expect him to go into a coma, which he never did. His systems just gradually shut down, and he died at 52 hours old, on his third day of life.
After this first death, I had a miscarriage the next year at 9 weeks. Physically more painful than any of my labors, and difficult in and of itself, it also brought up all the emotions of Colins death. Our daughter was about four at the time, and I remember her crying harder than I've ever seen her cry before when I came home from the hospital and said the baby had already died inside of me.
Between the death and the miscarriage it took many years before I was ready to try again. Which unfortunately didn't work due to the stupid E. Coli infection.
Takeaways
People. The positive. People are amazing. The amount of support we had from others was unbelievable. When I miscarried, people phoned and said "I had a miscarriage too. I'm so sorry."
The number of people who applied to be an organ donor for Kyle made us extremely humbled. Many others who couldn't apply because they didn't match the strict criteria (which included being under 150 pounds) signed up for the organ registry.
People came to visit us at the hospital in Toronto, sent cards, brought food and gift baskets, cleaned our house, mowed our lawn, raked our leaves, gave us money, looked after our daughter, bought thoughful gifts for our daughter, and sent us on a needed and delightful family outing to a musical in Toronto after the fact.
Many new friends were made. Acquaintances became friends. Both in real life and online.
People. The negative. As much as people have supported us, there are now groups of people I'm not very comfortable being around. I can't be around people who talk about how difficult being a new parent is. Or around those who don't treat their children well. I skip social events like baby showers unless they are family or already a really good friend.
So many people around us have watched us go through all of this. They remember each instance with "I was pregnant with X at the same time." They have trouble being around us. I completely understand because I would probably be the same way if the situation was vice versa.
Medical Recognition. Due to the huge amount of background work for us last year, there are many more medical professionals who are now aware of this extremely rare disorder. There have been two other baby boys born in Canada over the last year and a half with this disorder, and although their mutations were less severe than ours to begin with, both have survived. The hepatocyte cell transplant that they were going to send us to the States for, is now offered in Canada as well due to our expression of concern as to how difficult going to another country would be for us as a family and that we would have no social support being so far away.
If You Want to Offer Support. If you know someone going through a loss and you can think of something to do for them, just do it. People would ask all the time what they could do. To be honest, we were so overwhelmed I had no idea. I also didn't like asking for anything, even if it was needed. We were told by our pastor and social worker to learn to just say yes. So whenever someone had a concrete offer of something "Can I bring you a meal? Can I come visit you? Can I rake your leaves?" I said yes. It was the best advice we could have been given. Saying yes was hard for me, but it made our lives easier, and provided a way for people to help when they felt our helplessness. We were overwhelmingly humbled by the love around us. So my advice, is to think of something concrete to do for your family/friends and just do it.
Final note: OTC is one of 6 different Urea Cycle Disorders. I am a carrier. If I get pregnant again, with each pregnancy there is a 1 in 4 chance that the baby will be an affected male, and with the specific mutation that we have, means that without treatment the baby will die at 3 days old from ammonia poisoning. There is another 1 in 4 chance that the baby will be a female carrier.
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 pregnancy specialists to look after my health to keep my ammonia levels low during the pregnancy and birth, genetic teams from four different hospitals, and transplant teams from two hospitals. It had also been arranged for us to fly with him to Yale university hospital for an experimental hepatocyte transplant of liver cells, and to be flown back to Toronto if a liver were to come available while we were there.
Toronto General had more people apply to be a living liver donor than they had ever had apply for a child before. Apparently many children have no applicants at all, and their only chance is with a cadaver liver. At the last moment, only a few days before I delivered, they even decided they would be willing to try a transplant with the wrong blood type if one came available because of the severity of the situation. Again, this was something that had never been done with a child at Sick Kids, only with adults. Pretty amazing preparation work behind the scenes with all the teams co-ordinating together.
I'm still dealing with this death a year later. I'm angry. I didn't expect to still be angry after a year, but I am. I'd like to be rid of the anger. Unlike the doctors, we didn't actually expect our son to come home because we understood how hard it is to treat OTC. But in all the potential situations in my mind, one that didn't enter was that of an E. Coli infection! E. Coli? Really? Found in the picc line, it most likely got there from one of the many many staff not washing their hands properly. There were dozens of staff handling him each day... Its impossible to say which person caused it. The almost impossible to treat genetic condition was actually being managed successfully. Without the infection, he would have made it through to being transplanted. Long sigh. The infection was found on day 8. It became septic and caused brain stem damage. Test results on day 14 showed the infection had caused damage to the part of the brain that tells your body how to move. It had also resulted in no response to sound or visual stimuli. His last natural movement was on day 13. His brain had actually atrophied (got smaller) from one week before. All from the E. Coli infection, and not the genetic condition.
The treatment options they were using last year were very new, and as I already stated, we were extremely appreciative for the great attempts at treatment that were made. We know the treatment methods are new, because in 2003, our first son Colin was born with the same condition. So, yes, you read correctly, this was the second time we went through a neonatal death. Transplant was not a treatment option for infants then. We went through that pregnancy learning he was affected at around 20 weeks knowing there was no treatment. We did "care by parent" at the hospital, and he was held the entire time he lived. He was a typical newborn until the 40 hour mark, at which point his system started shutting down from poisoning. We had been told to expect him to go into a coma, which he never did. His systems just gradually shut down, and he died at 52 hours old, on his third day of life.
After this first death, I had a miscarriage the next year at 9 weeks. Physically more painful than any of my labors, and difficult in and of itself, it also brought up all the emotions of Colins death. Our daughter was about four at the time, and I remember her crying harder than I've ever seen her cry before when I came home from the hospital and said the baby had already died inside of me.
Between the death and the miscarriage it took many years before I was ready to try again. Which unfortunately didn't work due to the stupid E. Coli infection.
Takeaways
People. The positive. People are amazing. The amount of support we had from others was unbelievable. When I miscarried, people phoned and said "I had a miscarriage too. I'm so sorry."
The number of people who applied to be an organ donor for Kyle made us extremely humbled. Many others who couldn't apply because they didn't match the strict criteria (which included being under 150 pounds) signed up for the organ registry.
People came to visit us at the hospital in Toronto, sent cards, brought food and gift baskets, cleaned our house, mowed our lawn, raked our leaves, gave us money, looked after our daughter, bought thoughful gifts for our daughter, and sent us on a needed and delightful family outing to a musical in Toronto after the fact.
Many new friends were made. Acquaintances became friends. Both in real life and online.
People. The negative. As much as people have supported us, there are now groups of people I'm not very comfortable being around. I can't be around people who talk about how difficult being a new parent is. Or around those who don't treat their children well. I skip social events like baby showers unless they are family or already a really good friend.
So many people around us have watched us go through all of this. They remember each instance with "I was pregnant with X at the same time." They have trouble being around us. I completely understand because I would probably be the same way if the situation was vice versa.
Medical Recognition. Due to the huge amount of background work for us last year, there are many more medical professionals who are now aware of this extremely rare disorder. There have been two other baby boys born in Canada over the last year and a half with this disorder, and although their mutations were less severe than ours to begin with, both have survived. The hepatocyte cell transplant that they were going to send us to the States for, is now offered in Canada as well due to our expression of concern as to how difficult going to another country would be for us as a family and that we would have no social support being so far away.
If You Want to Offer Support. If you know someone going through a loss and you can think of something to do for them, just do it. People would ask all the time what they could do. To be honest, we were so overwhelmed I had no idea. I also didn't like asking for anything, even if it was needed. We were told by our pastor and social worker to learn to just say yes. So whenever someone had a concrete offer of something "Can I bring you a meal? Can I come visit you? Can I rake your leaves?" I said yes. It was the best advice we could have been given. Saying yes was hard for me, but it made our lives easier, and provided a way for people to help when they felt our helplessness. We were overwhelmingly humbled by the love around us. So my advice, is to think of something concrete to do for your family/friends and just do it.
Final note: OTC is one of 6 different Urea Cycle Disorders. I am a carrier. If I get pregnant again, with each pregnancy there is a 1 in 4 chance that the baby will be an affected male, and with the specific mutation that we have, means that without treatment the baby will die at 3 days old from ammonia poisoning. There is another 1 in 4 chance that the baby will be a female carrier.
Thanks so much for sharing your story. It is so important to continue sharing our stories to spread awareness about rare disorders. I think of you guys often. I imagine anger is completely acceptable in this situation. There is nothing okay about losing your child!
ReplyDeleteSending you love. Thank you for sharing your words and wisdom. xxo
ReplyDelete