With the winter coming faster in some areas then others, I thought this was the perfect time to talk about the struggles some heart kids face in the winter months.
Branden from the age 5 and up seemed to always struggle to keep warm in the winter. You would often see his hands/face red or blue and his toes too. It didn’t matter if I spent the $100 or $400 on the best or warmest jacket the companies declared, he just never could keep warm. I know $100 doesn’t seem like a lot today, but it was 15/16 years ago. But it got to the point where he wasn’t allowed out at recess during school day and long fun trips to the local hill turned to short trips for tobogganing.
When Branden was a baby and living in North Bay and relying on the bus system and walking to and from daycare Branden was fine in a good winter jacket and snow pants, bundled up with a blanket. It wasn’t until we moved south and he started to go to school did I see the big change. In February 2004, Branden started turning red fast and sometimes blue. No longer did the warmest jacket work. He couldn’t control his body temp. His arms turned to what I call “marble cheese”. I went with my gut and called sick kids. Off he went for a unscheduled echo. They discovered one of his two leaflets clasped. For the next 10 years it was a up and down battle to keep him warm.
Branden started off by staying in at recess on really cold days. (School should accommodate your child’s special needs). For the first few years he was sent to the office with actives that I provided. He was allowed to bring a friend to play the games. For the most part it seemed to always be a girl, I guess they had a soft spot for him. This worked for a bit but the battle to keep him warm continued.
It seems the unscheduled echos in Feb/March became almost like tradition. For 10 years every Feb/March I would called his Cardio Doctor and say Branden isn’t looking right. Most of the time he was fine- twice he wasn’t. BUT nothing would keep him warm during those cold winter months. I spent hundreds of dollars on new snowsuits the best of the year the warmest jacket ever. I would buy thermal underwear and shirts, the thickest socks. Nothing kept him warm. It was crazy. So no longer was he able to go out on the nicer winter days at recess. He started joining some clubs the schools ran and some, like Lego club was a big hit for him. Branden’s only time spent outside was walking to and from school. It got to the point where I felt like the weather police and kept him hostage in the house. Which was sad as he had younger siblings who had no issues playing outside. (I would let him out for a 20 mins at a time, but I guess this was the year Branden realized he wasn’t a regular child). But all through school from Jk-grade 8 Branden wasn’t going out during the cold days he lost and never had the chance to learn social aspects of play outdoors with other kids..
So how do we keep our heart babies, toddlers, children, teens and almost adults warm?
It gets harder to do, with the new suggestion from private organizations that have done some research on this on what is safe and unsafe in regards to car seats.
If you can’t put snow suits in the harness car seats, you can’t use those nice warm JJ coles bags any longer to bundle up your baby it gets harder to keep those little ones warm. I know with baby number 5 all these suggest came into place, we have seen them pop up on our local news feeds on facebook, in the papers and maybe even on yahoo. I worried about how to keep this youngest one warm and she isn’t even a heart baby. I researched a lot to find an infant car seat that sold a warm bag, that you were allowed to keep in the seat. I bought the plastic cover to go overtop the car seat ( best invention ever) and put a warm blanket on top of the seat while going from house to car. I also bought a fleece suit; it was thin and safe to go in the seat. She was warm all winter.
It gets harder when they are out of the infant seat. If you can’t put kids in seats with snow suits how do you keep them warm. There are a few suggested jackets that would be safe according to all of the research I have done. Primaloft is one I have found in my research if you lucky and get a code you can sometimes get it for 50% off at Gap. These are some of the struggles a mom’s of of little ones face, But would that car seat approved jacket, keep a heart toddler warm outside building a snowman? ( we all know we are building Oalf’s this year). I wish there was a magical answer to this question. I wish the Doctors would give us a manual of what to buy them to keep the safe and warm.
But I guess there isn’t. Each heart child is different, some can handle the weather changes and others like Branden can’t. I think it depends on which stage they are in during their heart journeys. I can say what worked for my heart child in the last 16. It really is trial and error and learning from experience. I wish heart parents would share more often what has worked for their kids so parents wouldn’t have to struggle so much.
Things that have worked for Branden:
I have bought many brands over the years nothing kept him warm or if it did it was for a short time frame. I started researching jackets and brands of what people used when climbing snowy mountains or people who camped in the winter. I checked out MEC which is a supply store I heard many people talking about. I talked to people who work outdoors all day long in all weather conditions. Through out my research one of the Jackets I have found was the down filled North Face jacket. I went to a store near by that sold them. I got one 50% off. I tend to buy in Jan/Feb where they are trying to get rid of winter stock. I gave it a try, when Branden started fooling around on the coldest days instead of doing his papers I knew for once I found a jacket that kept him warm. I can’t even say Branden was in great health as we knew our days were number to the next surgery. But he was out for a few hours and wasn’t cold. I felt like I found gold. He needed a good warm jacket and snow pants, good Sorel boots, thick socks, layer clothing and a hat. Finally at 14 he was able to join the cold winter weather.
These suggestion might not work for your child but they might also. Lets start talking more about what we do to keep our kids warm and safe this cold winter.
Here is a blog of other suggestion
Shannon is a regular blogger for Cardiac Kids. To read more about her and her son Branden click here