When my husband and I got pregnant with our first baby, it never crossed my mind that something could possibly be wrong with my child. We went to our first medical ultrasound and our world was completely torn apart. From what I can remember the doctor told us that his skull appeared to be soft and his femur was broken. What I remember most is that he said he didn’t know if our baby would live or die.
We had to go for follow up appointments at a more specialized hospital and our hearts were torn apart time after time as the doctors would say it’s like he has little chicklet-sized bones or I really don’t see how a baby could survive like this. But then one day we were given hope, we were told we were going to meet with a different doctor.
It was found that my husband and I both carried the most severe gene for hypophosphatasia (HPP) and if our baby infact had HPP this was the doctor who would know how to help. After meeting with her I felt so much hope, she told us about an enzyme replacement therapy that has helped other kids with HPP and she couldn’t say for sure, but didn’t see why it couldn’t help our baby. Finally someone who talked about what could be done to help, someone who made us feel like this is something we could take on and that hopefully the outcome would be just as good as the other kids she’s helped.
December 20th 2011 our boy Deklyn, was born by c-section. He didn’t cry, but I saw him as they brought him passed me to give him to the Neo-Natal Intesive Care Unit team. A nurse had been taking pictures for us as he was being born so my husband showed them to me as they finished stitching me up. After quite some time we were told they had Deklyn in critcal but stable condition and we could go see him. I’d never seen anyone hooked up to so much in my life, I honestly don’t know how I got through that moment with out a melt down. He looked so sick, but for some reason that’s not what I remember seeing. I remember his curly hair, his fingers and toes everything that I’m sure every mom looks at right after their baby is born.
The next few months were a roller coaster of learning how to live in the hospital world. Deklyn was in fact diagnosed with HPP and was able to start the treatment the day after he was born. It took some time and trial and error with dosage but slowly we began to see improvements. His skull began to harden, his x-rays started to show bones (his first x-rays had very little bone show up) and in the area of bone growth it just continued to get better and better. It was absolutely incredible what this drug did for our son.
We spent the first 3 months of his life in the NICU, as he was getting bigger they decided it’d be a good move for Deklyn to go to the PICU (Pediatric Intensive Care Unit). There Deklyn got to have his own room which was nice for us privacy wise. Although Deklyn’s bones were doing well, he always seemed to taking a few steps forwards and then back.. he’d have a really good week and then a terrible 3 days or so. He wasn’t really making much for strides on his ventilator settings so we came to the decision that it would be best for Deklyn and us as a family if Deklyn got a tracheostomy. One of the hardest decisions of my life, but it was the best one we could have made for Deklyn.
After he got his trach and he was becoming somewhat stable we got moved to the Pedicatric Special Care Unit, here we would learn how to care for Deklyn on our own but of course still have nurses and doctors around. The next 6 months were the best times we had with Deklyn, we finally felt like parents. I have to say, Deklyn is the happiest kid I have ever seen for all he went through he was amazing. He’d have a code blue and come out of it clicking his tongue and blowing kisses.. I have never met anyone with his strength. But he still had so many ups and downs, we had to make trips back to PICU when he’d get very sick, we still are not sure why he’d get so sick.. the best guess we have is that his lungs never really got to develop properly due to him not having a rib cage in the beginning. He developed Pulmonary Hypertension on top of everything else and it seemed this would make him very sick at times.
In February of 2013 Deklyn got so sick he could not recover and he passed away. We had an incredible 14 months with Deklyn thanks to the enzyme replacement therapy, with out it we would have only had days I am sure. We are so grateful for all that has been done for Deklyn and us as a family and I am so grateful that other families who have children with HPP are able to see their kids live and thrive while using this enzyme replacement therapy.
When you lose a child you feel pretty helpless, so my husband and I decided to start an endowment fund through the Children’s Hospital Foundation of Manitoba called Deklyn Sawatzky’s Endowment Fund where we have been raising more money to help kids like Deklyn, our hope that all children with the disease will be able to go on a live normal lives like every child deserves.