Host a Cuppa for HeartKids
More than 4 young Australians will die this week as a result of congenital heart disease.
HeartKids is the only organisation in Australia solely focused on all aspects of Childhood Heart Disease (CHD). Offering support, encouragement and hope to families of children with Heart Disease, while raising awareness and vital funding to support research into the causes of this chronic disease.
For many families of children with CHD the future is clouded with uncertainty, therefore HeartKids’ goal is to secure the futures of these very special kids.
Unlike Coronary Heart Disease, which is often the result of lifestyle choices such as smoking and excessive consumption of fatty foods, the cause of Childhood Heart Disease is unknown. What we do know is it is not the fault of the parents or the child. In most instances, it is simply the cruel hand of fate, often with devastating consequences. Heart disease is currently the leading cause of death in young children in Australia accounting for more than 30% of childhood fatalities. A common misconception is that childhood cancer causes the highest incidence of childhood deaths, however nearly twice as many children die each year from congenital heart disease compared with all childhood cancers.
Imagine going for your 20 week scan and being told that your baby has a life threatening heart condition, or giving birth and seeing your baby for the first time only to notice that he is an alarming shade of blue? Unfortunately this situation is not a hypothetical, but the reality for the parents of one in every hundred babies born in Australia, or put more simply six parents a day are put in this devastating position at what should be one of the most exciting and joyous times of their lives.
What do you do?
Who can you talk to?
What does this mean for your baby?
Kate Mason and her husband Jeff went though this heartbreaking experience when one of their twins was diagnosed with a complex set of heart defects at Kate's 26 week ultrasound, this is Kate's story.
The weeks that followed the initial diagnosis after her 26 week scan were full of tests and worry. In the time prior to the birth, a time which should be filled with excitement and anticipation, Kate and her husband, Jeff, spent their time meeting endless doctors and health experts who tried to prepare them for the birth and what to expect.
Kate and Jeff were told that one of their twins had a complex heart condition. Their little twin b (as she was called in-utero) was diagnosed as having double outlet right ventricle, a large ventricular septal defect and critical pulmonary stenosis. All Kate can remember thinking was that this was a whole lot for one tiny little baby to deal with.
The twins were delivered by a scheduled c-section. Amelia was born first and their little heart baby Chelsea arriving two minutes later at 2.1kgs. Chelsea was immediately taken for an echo, then directly to the intensive care unit.
Chelsea was small for heart surgery and the specialists decided to wait until she gained weight. However, on day 5, complications developed and she was diagnosed with a bowel infection that would require future operations. Although it had been detected very early, it could go either way and Kate's own frantic research on the web discovered that babies have a 50% chance of survival.
The hardest thing for Kate and Jeff to come to terms with was the unknown - they knew that Chelsea could survive in spite of her heart complications however they were very aware that there was a myriad of other complications that could shatter their hopes without warning. The emotional rollercoaster they were on seemed endless and they also had 3 other children who needed love and attention, including little Amelia who was also only 5 days old.
Finally, 5 weeks after she was born, Chelsea was strong enough for surgery and Kate describes these as the "darkest few hours of our lives. We had no idea whether our beautiful daughter, who we had never taken home, held properly in our arms without tubes and beeping machines, would ever wake up and come out of heart surgery alive. It was so distressing and I felt like I was going to pass out or have a heart attack myself with the pain of leaving her with the surgical team." Finally, after and an endless wait they received the call from the surgeon to say that the procedure had been successful and they could see her in the paediatric ICU, however, only an hour later, emergency complications arose and they had to immediately re-open Chelsea's chest to remove the blockage. When Kate and Jeff were finally allowed to see their tiny daughter, her little chest was still open and covered in film. They were told that the next couple of hours were critical and they would just have to wait and see if she pulled through.
Thankfully, Chelsea made it through her first major surgery, however, Kate will never forget seeing her. "I was overwhelmed to see so many lines hanging out of her little arms and feet, along with beeping machines and monitors. I kept having flashes of losing her and thinking she may not live a life with her other 3 sisters. All the while, we sat holding her little swollen hands, tears of happiness streaming down our cheeks, thankful that at least she had made it through this first heart surgery."
In the following weeks and months, Chelsea continued to face seemingly unbeatable challenges and, one by one, she managed to overcome them, although at times, Kate and Jeff were told to expect the worst.
"Finally on day 65, we were able to bring our baby girl home for the first time. It was a magical day, particularly for our older girls who were desperate for our whole family to be together again."
At 9 months, Chelsea had another major open heart surgery in Melbourne. It was a full repair. This surgery came with its own complications too, including another emergency chest re-open & kidney failure. But once again, Chelsea recovered a little each day and eventually her family got to bring her home to Adelaide.
Today, Chelsea has turned the corner. She is well and developing both emotionally and physically. Her cardiologist anticipates she won't need further surgery [valve replacement to repair a small leak] until her late teens and Kate is looking forward to not having to attend cardiology clinic for another 6 months!
Throughout this ordeal, HeartKids was there to support and guide Kate and Jeff through the maze of specialists, hospitals and to help find answers to their myriad of questions. HeartKids put them in touch with other parents who could also offer support and advise. Please help HeartKids help other children like Chelsea and her parents, host a Cuppa for HeartKids and make a difference.