Recently, Alana, mum to heart kid Huxton shared a heartfelt post on our HeartKids Family Support Group on Facebook.
It captured a story heard many times from parents in our HeartKids community and is a reminder of how the journey doesn’t end after the hospitals and clinics as well as how together we can help other families heal the trauma of congenital heart disease (CHD).
Like so many other heart kid parents, Alana spent years terrified her child’s heart could fail. She watched him go through not one, but two major operations. And she comforted him through the nightmares he’s experienced since having open-heart surgery at only two years old.
Huxton is Alana’s third son, and at five weeks and six days old he was rushed to hospital for surgery after being diagnosed with severe aortic stenosis - his aortic valve was completely blocked. The surgery was successful, but Huxton would require open-heart surgery when he was two.
Over the next two years, the family tried to carry on life as normal. But really, things were far from normal, because every day, they lived in fear Huxton’s heart would fail. He got breathless easily, was tired constantly and became sick far too often. All they could do was watch and wait until he was big enough for his second surgery.
In January this year, little Huxton’s big day finally came and like any parent, Alana was incredibly nervous and anxious. Thankfully, the surgery went well. But his recovery continued after Huxton left hospital:
“They told me nightmares are normal. But this is his own home and he doesn’t feel safe. All you want is for him to be safe. It got to the point where I had to put Huxton’s bed in my room so we were nearby.”
And it’s not just Huxton who needed help. The stress of the past two and a half years had taken its toll on Huxton’s entire family. For Alana, that led to a worrying diagnosis:
“I could literally sit in bed all day. I couldn’t do anything. I was trying to make it all ok, but it was actually not ok. My doctor said it was post-traumatic depression. I’ve gone through so much. There are days when I just break down. I wouldn’t wish it on anyone.”
The Family Coping Program
Hearing Alana’s story reminds us that even though so many little hearts can be fixed with surgery, healing the trauma of congenital heart disease on a whole family can be much more difficult.
The good news is there is something we can do to help. Our ground-breaking new Family Coping Program will ensure HeartKids is there for heart families in their time of need.
The program is based on research by world-renowned researcher Professor Alun Jackson – and funded by generous HeartKids supporters like you. Over 18 months Professor Jackson studied 20 HeartKids families to find out exactly what caring for a heart child involved. And he included the emotional, financial, developmental and psychological impacts of CHD on the entire family.
The findings were remarkable, leading to the development of the Family Coping Program where last year we piloted the program, delivering it to 50 families. The feedback showed just how badly families needed more tools, resources and community connections to help cope when times got tough.
But there are still too many families doing it tough. You can help bring them hope with your gift this tax-time. With your generosity, we will always be there for heart families in need.
How you can help
The plan for the long term is make this program available to every Australian family facing congenital heart disease. To do this, we need to raise $200,000 by June 30 to help 400 Aussie families over the coming year:
- $50 could provide catering for an entire family during a Family Coping Program session
- $75 could ensure at least 10 families receive their own Family Coping Workbook, helping guide them through their difficult journey long after leaving hospital.
- $125 could provide a family with one of the 4 sessions needed to complete the Family Coping Program.
- $500 could put one family like Huxton’s through the full Family Coping Program, giving them the tools to navigate through their trauma and manage the significant social, emotional and physical challenges associated with childhood heart disease so they can better support their child and each other.
Together, we can make sure many more courageous heart families don’t have to face the trauma of CHD alone.
Click here to support families like Alana's!
I know how lucky we are to have you as part of the HeartKids family, and your loyal support provides comfort, compassion and care – a lifeline when other families worlds are turned upside down. As Alana told me:
“There are families out there that don’t have much support and HeartKids step in. They’ve made themselves feel like family. Throughout our whole journey they’ve been there. If we didn’t have them we probably wouldn’t be where we are today.”
As with so many other parents of children with CHD, Alana still has hope. Hope her son will live a full and healthy life. Hope her family will overcome their ordeal. And hope that each day, life will get a little brighter.
But there are still too many heart families doing it tough. You can help bring them hope with a gift today.
With your generosity, we will always be there for our heart families.