You may have noticed and wondered about all those bright colorful capes worn by the children who had open heart surgeries in recent photos posted on our facebook. We call those children “Heart Heroes” because of their bravery and courage but also because they have been empowered with the super hero gear by our good friends Kitty Burton and Sondra Dubas from Heart Heroes Inc. Here they share the story of their own journey as mothers of children with Congenital Heart Defects. This beautiful organization is bringing support to families all over the world, including locally here in the Baja!It was amazing to see them in action during this third round of open Heart Surgeries and realize that there are no barriers when connected by a life changing struggle for your child’s very life. The connection of your child’s health surpasses any language and cultural differences.
About Sondra Dubas:
I have been married for 23 years. After 10 years of marriage we had Ashely who is now 13 years old, our youngest daughter Nicole is 8 years old. When Ashley was born a murmur was detected; after we learned more about it our world changed. She was diagnosed tetralogy of fallot (a hole in the heart) and absent pulmonary valve. Often times, there are multiple physical complications in children with congenital heart defects. Ashely had her first open heart surgery at 3 years old. She had a complication from that surgery, where she had to use a breathing machine for 18 months. After that, life was normal. At 7 years old, she had to have her valve replaced (she will probably have to have it replaced again next year as she outgrows her current valve). During this procedure she suffered a stroke. Kitty and I met through a blog I was writing as Kitty was writing messages of encouragement and support. What we didn’t realize is that we lived within blocks from one another! It wasn’t until Ashely was out of the hospital that Kitty and I met during an event for heart conditions. The following year we worked on a fundraising effort through The Hospital For The Heart Kids creating Congenital Heart Defect awareness and that’s how we became friends.
About Kitty Burton:
My son Sam who was 2 years old at the time, was getting ready for a heart surgery. There were so many different opinions, that we didn’t know who to believe as there’s different ways for treating certain heart defects. As a parent, you have to be your child’s advocate. Sam had already had two heart surgeries and was a stroke survivor. I admired Sondra because her heart child was 6 years old and I thought if she can go through it and survive, so can we. I just drove my strength through her and got my inspiration to believe in my own strength and to trust God. Sam was my third child and at 30 weeks of pregnancy his condition was detected making it a high risk pregnancy. After delivery, I didn’t even have my diaper bag ready because I didn’t think I was going to be able to bring him home.
After his stroke, we did not know if he would respond with normal brain activity or movement. It’s terrifying and your other children have questions and normal needs which require your attention. A lot of times doctors say “your child is heart healthy”, but it’s meant for the moment as there is always a chance for a future complication. It is not a quick fix and it is a condition that the child will endure for the rest of their life. Some children may go through one heart surgery and not be required to have additional operations however many heart kids might have other complications in their lungs, gastrointestinal areas or develop feeding issues. It’s common for children with Down Syndrome to have a heart condition.
Where did the idea of the capes come from?
We heard of another woman in the United States who was giving capes to cancer patients and we thought that our kids needed something like that at a young age. As children get older, they question their health complications, inquire why it is happening and may experience a lot of anxiety. They don’t want to be Heart Heroes and simply want to live a normal life. The Heart Heroes Organization is changing and improving as our kids grow and encounter different life situations along their journey. We know that as we face new complications, other parents are as well so why not help them along the way?
How was Heart Heroes Inc. created?
Heart Heores started with the capes. At the time we just wanted to do something special for our children and the children of our community. We didn’t expect to be contacted by people all around the world. We now send thousands of capes to over 10 different countries and pretty much every State in America. It’s about emotional support for both children and grieving parents.
How did you get connected with the Los Cabos Children Foundation?
Sondra: Dr. Hammel was Kitty’s child surgeon. We heard that he was going to La Paz to perform surgeries through the Los Cabos Children’s Foundation-Spirit of Love Program so we had it on our heart to encourage and strengthen the children going through surgery. We asked Doctor Hammel to bring the children capes. When he returned to the US, Dr. Hammel showed us pictures of the kids with capes and said that they were a huge hit! Greg Edwards, President of LCCF contacted us to extend a thanks and requested that we keep sending the capes. Later, Greg saw us on a segment of NBC Nightly News and he followed up with an invitation to personally provide the capes to the children in the next round of open heart surgeries.
If you are interested in learning more about Heart Heroes, Inc. you can visit the website at www.heartheroes.org. You may also be interested in reading Sondra’s book entitled “Miracle of Belief” about her six-year old daughter’s fight to regain her life after experiencing a stroke during open heart surgery.
We have been so blessed by the partnership with Heart Heroes Inc. as they bring encouragement and inspiration to us and all the families of the Baja through words of support, compassion and care. I loved seeing them go around with their big bag of “goodies” handing items to the kids such as stuffed monkeys, coloring books, bubbles and of course the capes and hero gear. They shared their personal stories so openly with their photo album, telling the parents about their own experience with their children’s heart surgeries. Thank you so much Kitty and Sondra from the bottom of our hearts.