Shannon

Heart Month

A Heart Dad’s Perspective

My name is Rob, and my son Branden was born with Serve Aortic Stenosis Bicuspid Valve. Partly because of this condition, he is shorter than kids his age. I’m not the tallest fellow myself and I’ve tried to allow him the confidence in his height – no matter what it may be. I’m told often – much more often than I am told with my other kids that he looks a lot like me.

Which is curious and more than a little bit funny, because he is my step son.

Now we tend not to use the word “step” in our house. Branden is now almost 17 and I have been Dad since he was 6. We have a typical father/teen relationship. By this of course I mean he gets repetitive strain injuries from rolling his eyes at me almost hourly.

Moms, all mom’s, deserve so much more credit than they get. But Heart Mom’s deserve an extra flower, an extra hour of sleep, an extra long hug of support and understanding at Valentine’s Day I feel. How my wife, as a single mother dealt with surgeries, work, temperamental toddlers, etc I will likely never understand but I will always, ALWAYS appreciate.

But let’s not forget the Dad’s either. I may have been Dad for a wee bit less time than she’s been Mom, but I also CHOSE to be the father of a Heart Warrior. Whether by choice, or by design – fathers, grandparents, siblings, neighbours and more all contribute to the daily conditions of having a heart kid.

Sometimes, it’s easy to focus on the negatives … oh it is so easy … but there are also so many positives that a family can focus on as well. To help me focus on this I have created a “Pride Journal” for each of my 6 kids.

A few years back I went to the local stationary store, bought uniform books and since have been writing those moments of pride in my kids. My kids aren’t aware of the books … I hope the first “volumes” will be ready to share with them in a year or so and by then there will be about 4 years worth of special moments.

It’s easy during or after surgery to get lost or lose track of those moments of intense pride when things become stressful.  These books help me keep track of those special moments. First goals, good humour after surgery, character development and more – pride in your children can come in many forms.

I have written of Branden’s patience with his sisters, (he is the oldest of six and the only boy), I have written of his jokes when finished a major sugery, I even wrote of Branden’s first roller coaster ride last spring when finally given the opportunity – and although he was terrorized and likely will not ever go near another one – he can cross this off his list. He did it. He was brave, he took it as a personal challenge. Like so many other challenges in life, he climbed that mountain, and firmly planted the flag at the peak to say he did it.

Every Heart Kid has peaks and valleys. As does every relationship within families with Heart Kids as well. This is why it is so very important to recognize those moments of pride, love, and respect.

So with Valentine’s Day upon us, I encourage every Heart Family member out there to show pride. Show pride in their Warrior, show pride in the loved ones who support you. And, I personally, would like to write, however inadequately, that I have pride in all of you as well.

Not even sure I should post what I wrote as his is from the heart and mine more of a business plan, but I guess in some ways it good to write in both thoughts.

Rob 

February the month of love, the month of romance. This is what February means to most people. The excitement of Valentine’s Day, where is he going to bring you for supper, what’s he going to get you? This is what we look forward to as young teens, adults, even when you become a mom and get a night away. It’s the month your child works hard at school on heart crafts, stories about friends and math sheets with little hearts on them. Kids look forward to handing out Valentines cards to their classmates and a party at the end of the day. Maybe they made a gift of love for you. If your  in older grades you look forward to the dances and hanging out with friends. It’s really the month of hearts, pink or red hearts are everywhere.

For heart moms in the last 5 years or more, February isn’t just the month of Valentine’s Day it is also the month of CHD awareness. No other month would be better for such a cause then February.

With more and more babies and children being affected by CHD in part the wonderful world of social media, have allowed us heart parents to share our experiences, our joys and our heartache. We aren’t alone anymore. We have each other, we open our arms and hearts and families to pregnant mom carrying future heart warriors. It’s a wonderful feeling to have someone else to talk to.  Someone who gets your fears. Someone who are already been through the same steps as you have.

Because of the social media such as facebook we have been able to get in touch with heart families around North America. We have seen other people step forward to ask their cities, towns, provinces, states to declare the week of Valentines as CHD awareness week and February 14th as CHD day. The more areas that declare the more media that takes a interest in sharing the more knowledge the rest of the world will have an understand or have a small view in what our amazing heart warriors have gone through, the more knowledge people will have about CHD. Knowledge is a powerful thing. It only takes one person to start and other to follow until we are all over the media and have big function  to support and promote CHD like other illness.  It takes community to raise a child it takes a world to raise a heart child.

Shannon

Heighington-Ridley family

Shannon is a regular blogger for Cardiac Kids, her husband Rob was inspired to write his post in honour of heart month and the amazing sacrifice heart moms make for their families.

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Winter Struggles

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
http://carseatblog.com/24645/baby-its-cold-outside-winter-coat-suggestions-for-kids-in-carseats/

http://www.thestar.com/life/2013/01/21/for_children_in_car_seats_snowsuits_bunting_can_pose_a_safety_risk.html )

Shannon

Shannon is a regular blogger for Cardiac Kids. To read more about her and her son Branden click here

Off to School We Go

Trying to figure out what I should write about for this week’s blog was difficult; there are so many things to talk about.  Trying to fit almost 16 years into a blog can become a little daunting.  Instead of writing about all the ups and downs of the second part of Branden’s story, I felt it might be better to focus on the “heart warriors” entering the school system.  This topic gives most moms a tummy flop but nothing can be more scarier than sending a child with medical issues into the hands of the unknown world of teachers, students, gym, bullies or otherwise known as the school system.

I have seen this as mom and teacher of special needs kids; I come from both worlds.  Sending Branden to school for the first time was the scariest thing I ever had to do. I was putting him into the hands of people I didn’t know; would they understand the complications of his condition?  Branden entered school in the beginning stages of heart failure. There was so much fear of what could happen when he entered the doors to that brick building. A small child of less than 30lbs and still wearing size 3.  I wish I had the support or the knowledge I have now when he first went into that world.

So here are some ideas and thoughts before your child enters the world of school:

Before your child enters the system, it is best to sit down with their doctor and know what they can and can’t do during recess, gym or school trips.   Collect as much information on your child’s condition and side affects so you can inform the school. The more knowledge you have to share with the school the better so they can provide the best care for your child.  Once you have all the information, it is best to have a meeting with the school admin and teachers your child will have. All office staff and admin are in the school the week before it starts; most teachers are in and out that week also reading OSRS and getting their classrooms ready for the school year.

The school will also have what is called the “life threatening prevention form” for you to have your doctor fill out. The sheets can be filled out by your family or heart doctor. These sheet are so important; the information from these sheets will be placed on the board near the staff mailboxes. It will include a picture of your child and the condition and what they should do if the unthinkable happens (which has happened to Branden a few times). It will also be shown at the staff meeting at the beginning of the year so all staff will have a understanding about your child’s condition and what they should do if they see something amiss.

During the meeting, lay it out all on the table. You are working together as a team to make sure your child gets the best and safest education they deserve.  Inform them of the condition, what are the signs your child shows if something might not be right.  Every heart child is different; the signs of an issue will be also.  These signs may also change.  Give them all information on the condition so they can review it once the meeting is over. It is also very important to tell them what medication(s) your child is on so they can relay that to a medical team if a call is ever made. Tell them the expectations you have for your child; I say this because Branden tended to be babied at school and learned he didn’t have to do things aka homework because it was stressful.  You need to make sure you are 100% comfortable that the staff has a full understanding of your child’s condition. As a mom I failed at this; some admin shrugged it off and I don’t think they understood the seriousness of Branden’s condition until he collapsed at school in 2008.

School trips tend to be a lot of fun for kids; they get to learn by doing instead of being in the 4 white walls of the school.  There is a new rule that no child is left behind. So the teacher should be booking trips that your child is able to attend; but this doesn’t always happen so a reminder is need.  This is also where your “life threaten prevention plan” comes into effect.  On most trip forms it will ask if you child has one of these; the teachers can bring the sheets with them on the trip.  On some trips, staff at the destination will also ask the teacher if there is/are any medical issue(s) they need to be aware of. That way the staff dealing with your child will be able to change or modify their program to fit everyone’s needs. If you want or are able to volunteer for trips, just make sure you have your criminal record check with the vulnerable screening. If you pick up a form from the school you won’t have to pay for a criminal check.  It could take a few days to a couple of months to get one.

When any child enters the school system they will be meeting many new children. The excitement of making new friends and play dates and the bonding of friends begins.  However they will or might also meet children that aren’t so nice; its best to talk to your child about kids they will meet.  But if your child does encounter a bullying situation, it’s is best to talk to the teacher or admin right away to try and nip it in the butt.  Being small and not able to do a lot of things other kids could, Branden encountered a lot of bullying. If the bullying doesn’t stop or you don’t like how it was dealt with at the school, call the superintendent; this is what they are there for. After talking to the school or a superintendent, a plan should be put in place to deal with the situation. Depending on the age or what happened, your local police department will help with talking to the other child’s parents.  It is important to nip it in the butt; I have seen the damage bullying can do to my own child and children I have taught.

Another thing to consider is there is a large percent of “heart warriors” that struggle at school whether it is academics, recess, social skills; Sick Kids, in the heart department, offers help and support for your child as will the school system.  There is a link to heart kids and learning disabilities and ADHD; Sick Kids realized this and have hired their own Psychologist – Renee.   She is able to give you a free educational physic test to find out why and where your child is struggling at school. It is amazing that Sick Kids provides this as the waiting list in the school system could take years and to do it privately could cost up to or over $3,000.  Renee is amazing, funny and wonderful with the kids and the parents. She makes you feel like you are talking to family or a friend.

Branden is now in high school and he is doing better then ever. I was terrified to send him to high school; the kids are bigger; there are more bullies and fears of what could happen. But I also found my fears bled into him.  There was a very smart nurse in the local hospital who told me to watch what I am doing because I need to be careful not to turn him into a cardio-pelagic.  In some ways I bubble wrapped Branden so tight that it will take years to undo that protection and let him lead a normal life.

Shannon 

Shannon is a regular blogger for Cardiac Kids. To find out more about her or to read Branden’s story, click here.

Check back in 2 weeks for a post from Laura 

Branden’s First Few Years

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Branden, 15yrs old, had severe aortic stenosis and 2 leaflets instead of 3. He now has the ROSS. This is the story of Brandens first few years,

In the winter of 98, I discovered I was pregnant. After a very difficult pregnancy, my water broke on the morning of Sept 22. I had no idea what to expect. After 2 hrs and 50 mins I was holding my little boy Branden. He was a bit gray; but soon I was holding him again. It was the most wonderful moment of my life.

Once in our room, the nurse listened to his heart said he had a big heart murmur. Which we didn’t think was a big deal.  After 5 days and a lazy sucker, Branden was put into the ICU. The peds on call listened to Branden’s heart and told me he thought there was something wrong with his heart and kidney. Off Branden went for an echo, 2 hours later I was told he was fine, we could go home the next day.

At 7 weeks old I rushed Branden to the hospital because he had a fever of 104.5. The ER doctor told me he was fine that he had  RSV and to give him Advil  and saline and sent us home.  Once home I was talking to my mom and I swear he started gasping for air. My mom told me to bring him back. So off I rushed him back to the ER; it was the same doctor. Let’s just say it wasn’t a good experience but I convinced the doctor to admit Branden to the hospital. The next morning when a different peds came to check on Branden he also believed there was a heart issue. Branden went for another echo. I was at home letting the dogs out when I got a call that change my life forever,  I was told he would need heart surgery. They wanted to send him to a hospital in Ottawa but I asked for Sick Kids as it was close to my parents.

Two weeks later I was at Sick Kids for his appointment. They sedated Branden, did an echo, then we went to meet Dr Benson. I was told Branden couldn’t wait, that he need surgery ASAP. On Dec 1st, 98 I handed my little baby boy to a stranger never knowing what we were getting ourselves into. I think I was still in shock.  Soon after, I entered the heart world,  I was now a young heart mom with a child that has amazing courage and is my hero.

They had a few issues during, what is now called cath surgery. 15.5 years ago I was lucky they did a cath, if he was born 6 months earlier he would of had open heart surgery. Things have changed so much again. They used to use a balloon to stretch the valve now they use a stunt. A couple of the issues they had were that the balloon popped therefore sending carbon dioxide into his body, it also ripped his valve. After 2 nights at sick kids we were sent home. Really the scariest part was going home again. I wanted to wrap him in a bubble and protect him forever.

In 2004 Dr Benson transferred Branden to a new cardiologist Dr  Chaturvedi. After an echo in 2004, I was told Branden would need another surgery as one of his two leaflets clasped. After talking to the surgery team they decided not to do surgery and put Branden on blood pressure pills.  His particiation in physical activities was modified. Each year we went to Sick Kids for check ups. It was more like very 6 months; we always had an extra  echo in Feb; Branden doesn’t seem to like the cold winters. Each winter Branden was allowed to do less and less. To the point where Branden wasn’t allowed to take part in recess or gym. It felt like I had to wrap him in a bubble even more. Dr Chaturvedi brought Branden up a few times for surgery and was always told no.  It was very frustrating as Branden couldn’t lead a normal life like the other kids. I was upset that they kept refusing my child; it was a waiting game that wasn’t fun to play.

In Feb 2008,  I once again called Dr Chaturvedi, Branden was having chest pains. After many trips to Sick Kids for echo’s and MRI’s; it was discovered  Branden heart was enlarged and was filling up with blood. We were told his surgery would be in Sept, after 2 weeks it was changed to Aug. We were going to Sick kids weekly. Soon the surgery was moved to July.

Then in June I got a call the call a lot of heart families fear, Branden had walked up the stairs to class and started having chest pains and couldn’t see. Thanks to an amazing teacher and principal The calmed Branden down and he was sent to the ER.  Branden heart was in distress and after talking with sick kids his surgery was now in 2 weeks.  He wasn’t allowed to go to school and I asked for a leave from work. On June 21st, 2008 Branden met Dr Van Arsdell and his fellow Dr Honjo, they would be performing the ROSS on Branden. During the surgery they changed their minds and repaired the rip in the aortic valve. The surgery was a success.  He recovered from that surgery so fast for the first time in years wanted to run around.

Once he was healed from the surgery, we were able to focus on Branden’s lack of growth. Between 2004 and 2008 Branden didn’t grow which could have been because his heart wasn’t functioning right or could have been the ADHD meds. After meeting 3 different growth doctors, he met an amazing one, Dr Urbach at Sick kids, she was able to help Branden. Although he is still behind, we are seeing some growth. Things were looking up.

The best advice I got from a SickKids nurse was don’t turn him into a cardiac paraplegic. She said to let him live. I realized that I had wrapped him in a bubble for so long that he missed out on a lot of childhood activities.

To be continued ……

Shannon,

Shannon Heighington is a regular blogger for Cardiac Kids. Read her bio and learn more about Branden here

Be sure to check back for Caitlin’s first post