On September 1st, 2013, our little boy entered the world. Little did we know that our life was literally going to be turned upside down and very fast. After the doctors examined Colton, they came and told us that he was very floppy. I remember saying, "of course he is, he was just born." The doctor said, "no, he's very floppy like a ragdoll, and we need to transfer you both to another hospital that has a pediatric ward." So we got transferred to another hospital where they also didn't know why my baby was so floppy. They ended up sending us to The Hospital of Sick Children in Toronto. At that point, I knew something was very wrong as you only go to Sick Kids when it's something major. Once the ACTS (Acute Care Transport Service) from Sick Kids got to us, Colton stopped breathing. Right before our eyes, the ACTS team was doing CPR on our 6-hour old baby. Once he was stable, they took him to Sick Kids, and he was admitted to the NICU.
Once at Sick Kids, they ran a bunch of tests, one being a genetic test. A week later, we got a diagnosis. Wolf-Hirschhorn Syndrome (WHS/4p-).
It's a very rare genetic disorder, affecting 1 in every 50,000 live births. I read somewhere that your odds of being a pro athlete are twice as good as your odds of having WHS. I had never even heard of it myself until my own son was diagnosed. Those affected with Wolf-Hirschhorn Syndrome have global developmental disabilities, multiple health problems, overall susceptibility to illness, and fragile general health that WHS individuals possess. They also have a questionable lifespan. A third of affected individuals will not live to see their 1st birthday. Another third then do not make it to their 2nd. For those who do survive those tenuous first two years, death in childhood is still common. Those who are fortunate make it to their teens. Those who are even more fortunate make it into their 20’s. Those that are truly fortunate make it into their 30’s. After that, the numbers drop dramatically. We never know what may take our children or when, but the possibility is always looming. This is the reality we live with every day. I opt not to actively think about it most of the time, as it is too painful, it will not save him, and it is a waste of the precious time I have with him.
I remember sitting there crying when we got his diagnosis; I knew my vision of motherhood was going to be completely different than what I first thought it would be for myself. Not knowing his syndrome, being so rare, I had to turn to Google. Not the best of decisions on my part. I had to grieve for my newborn boy, not knowing what the future would hold for him and, in turn, try to be the most supportive, nurturing mother. All I had for this little boy was my unconditional love, and no one was going to take him away from me. One of the doctors at Sick Kids probably knew I was feeling this way and told me to read the poem: Welcome to Holland.
Colton stayed at Sick Kids for two months. Mostly to work on his feeding. He wouldn't take a bottle or breast milk, so they inserted a Gtube (feeding tube) when he was a month old. He is fed every 2 hours to make sure he gets all his necessary calories. Once he got home from the hospital, it would be just my husband and I. The real test. No nurses, no doctors, no backup. I felt helpless, but I knew I had to power through all my emotions as this beautiful little boy was counting on me.
Some of the symptoms that Colton has in regards to WHS/4p- are as follows:
Seizures occur in over 90% of WHS children. Colton does suffer from seizures. His longest one to date has been 2 hours long. Doctors had to sedate and insert a breathing tube to administer medication to stop him from seizing. He has hypotonia (low muscle tone), so even though he walks, he gets very tired fast, so on long walks and adventures, we use his wheelchair. He has a coloboma in his right eye, which doesn't dilate, making it sensitive to light. He is non-verbal but is a great communicator by using his gestures, some sign language and his communication device.
At three months old, we started occupational and physical therapy, and seven years later, it's still part of our lives. At the age of 2 years old, speech therapy was also introduced. With the help of OT and PT and A LOT of hard work, Colton was able to prove the doctors wrong. At 15 months old, he was able to sit up on his own. At two years old, he was standing and bearing weight on his legs and just before his 5th birthday; he started to walk.
Colton is such a social little guy who loves going to school. His favourite things are music, dancing and reading. He only plays with one certain type of toy, school busses. He has quite the collection. Colton gets all his nutrition fed by Gtube, but on occasion, he does eat orally as long he is in the mood to eat (which isn't very often). Everything he eats orally has a very smooth texture. His favourite foods are yogurt, apple sauce and ice cream. Colton, now, just shy of his 7th birthday, is the happiest little boy, and I wouldn't go back and change anything. He has made me the strongest person; I never thought I would be. And for that, I thank him every day.
We are so grateful for the incredible, generous donations from businesses and citizens within the City of Guelph and surrounding areas. Without those donations, children like Colton would not be able to receive such wonderful gifts that normally would not be feasible for most families. Colton has yet to use his wish from Guelph Wish Fund, but I'm sure that Colton will make the best wish possible when the time is right. Personally, I would like to thank each and every person and business who has donated to this incredible charity. From the bottom of our hearts, THANK YOU. ❤
-Brent and Natalie