Local CHAMP sets the bar high

Times Reporter   

 

A bundle of energy and a can-do attitude were the first things I noticed about Colton Sheppard. Then I noticed the awesome Jake the Pirate pattern on his prosthetic leg. The leg didn’t appear to slowing the toddler down in the slightest. 

Colton has Adams-Oliver syndrome. He has a heart condition, bilateral missing feet and a bald patch on his head. The bald patch is in the middle of his head, where the soft spot is. Most babies with that patch have an open cranium and you can see right in. A skin graft is normally needed to close it at birth. The Sheppards were lucky they didn’t have to deal with that in addition to the heart condition. 

“Colton had open heart surgery at 23 days old, and he was a little fighter, he got RSV (Respiratory Syncytial Virus) while in hospital, so it wasn’t just staying for his heart anymore, it was staying for heart and lung issues. He ended up coming home on oxygen because of his lungs,” said Chelsea Sheppard, Colton’s mom.

When Sheppard was 28 weeks pregnant they found out their son was missing his feet. 

“It’s a dash of your hopes and your dreams and you feel down on yourself, almost like what, happened to our future we thought we were going to have. It’s always s a lot worse when you find out initially,” said Sheppard.

“I didn’t believe them because I was like how do you not see his feet on an ultrasound until 28 weeks. In hindsight, I look back on all the ultrasounds that we had and it was perfectly visible the whole time, but if you didn’t know what you’re looking for it looks like it’s just the edge of the sonogram.”

Thanks to the Alberta Children’s Hospital the Sheppards were set up with the amputee clinic fairly quickly after Colton’s birth, and from there were put in contact with the War Amps.

Recently the family took a trip to Winnipeg to take part in the War Amps Child Amputee (CHAMP) seminar. 

The seminar brings together young amputees from the western provinces (excluding BC which has its own program) to learn more about themselves, and to teach families the skills needed when dealing with people and their questions. The theme this year was ‘Set the Bar High’ and learning to not let an amputation be a barrier to living a full, active life.

“CHAMP’s has really given us the tools to accept, and not have guilt for it. I don’t think there was really much for guilt for us … I had a normal pregnancy, there was nothing that I could have done different, it wasn’t anything to do with what I did during the pregnancy,” said Sheppard.

“I think the worst is people making assumptions, ‘what happened during your pregnancy?’ or ‘what accident happened to him? did he have a lawnmower cut them off?’ because there are those (questions) too. Before people make assumptions a lot of people, even just within CHAMP I know for sure, we all prefer someone ask questions, we’d rather answer them, most of us, than have someone judging.”

CHAMP has taught them how to respond when someone asks, what’s ‘wrong with him?’ The way the question is asked, and the way the parents respond can have an impact on the child as they grow up.

Sheppard said you have to learn how to sit back and say ‘I don’t see anything wrong with him, he’s perfect, would you like to know what happened to his feet?’ 

This was the second year straight that the family went to the seminar; normally a family is invited every three years, but they can also request to attend additional seminars. 

“Last year we went and tried to focus on … how to handle judgmental people, stares and working on how to explain it to people and how to let people know about why he’s the way he is,” said Sheppard.

The way CHAMP has helped them learn to handle some of the questions has been great, and it’s been nice to have other families who know what the Sheppards are going through. 

“It’s nice to go to the CHAMP seminars … Colton has his friends that he hangs out with, he has a couple that are all around the same age, and they have different amputations but it’s kind of cool to compare prosthetics,” said Sheppard.

“This year the reason we went back to CHAMPS, my main reason, was because they’re (surgeons, want to) to drill out Colton’s growth plate in his knee.”

Colton’s right foot, the one with the prosthetic, doesn’t allow for a bend in the ankle because there’s not enough room, he technically has his ankle but can’t use it. If he has the surgery and the surgeons make that leg a little bit shorter, they could put the ankle in for the prosthetic, which would work by spring motion when he walks, and could open up a number of options for him later in life. 

If a percentage of his plate is removed, though, it reduces the growth of his leg by a certain per cent each year, and over time that leg will get shorter. There are both perks and potential downsides to it in Sheppard’s mind. 

Because Sheppard and her family were able to attend the seminar again this year, they were able to look for another family who has been through the procedure. 

While she was unable to find one that has already had the procedure done, she did find a family whose daughter will be having it done when she is 12. Colton’s procedure won’t be until he is 5 or 6, so Sheppard can now keep in contact with the other family and see how things go for them. Without the War Amps and the CHAMP seminar, that connection might not have been made. 

As Colton has grown, Sheppard and her husband have realized that they have a very stubborn and determined little boy on their hands and some of their fears for him have already been resolved.

“We realized after he started walking this isn’t going to hold him back, we don’t need to worry about the fact that he’s not going to be a hockey player, he’s not going to play soccer, we don’t need to worry about that, he’s going to do it all, he’s going to take longer at learning to do it, but he’s very determined,” said Sheppard. 

“That’s the thing we want to get across is if you can accept him and give him time, he’s going to wow your heart and he’s going to do the task set in front of him. We haven’t raised him as a disabled child; we haven’t raised him as different from our first. He has more doctors appointments, that’s it, and they give him these cool, fancy feet he gets to try out for a couple of months.

“Colton can actually walk without his prosthetic which is quite interesting. Our motto is, no feet, no problem. He won’t let anything hold him back or stop him from doing what he does.” 

Seeing all the inspiring stories of amputees who have gone on and realized their dreams has made the Sheppards realize that there are so many things Colton can, and will be able to, do especially with the right support, which they all have thanks to War Amps.