Grayson spent 45 of the first 90 days of his little life in hospital
Melissa Broomhall was 30 weeks pregnant when she and her husband Nigel received the news that would turn their world upside down. After a difficult pregnancy, with multiple hospital visits, they were told their baby boy was going to be born with a congenital heart defect. What followed was a roller-coaster ride of epic proportions, a journey that neither of them could ever have prepared for.
Grayson was diagnosed with Tetralogy of Fallot; he was born with not one but four heart defects and several holes in his tiny heart. Dad, Nigel says those first few days in hospital were some of the hardest.
"One of the holes was so large between the chambers of his heart when you put your ear to his tiny chest you could actually hear and feel the whooshing of the blood.” Surgery was scheduled for when Grayson reached 12 weeks old, or weighed five kilos, whichever came first. But little Grayson’s condition deteriorated so quickly he never made either milestone.
"There were countless visits to hospital. Many days and nights at the hospital as he picked up every bug going, and all the while he was slowly but surely dying before our eyes. He dropped from the 50% percentile for weight, down to below the 3rd. His skin turned grey and translucent. We had to feed him through a nasal gastro (NG) tube and all my support was needed to stop us both sinking into depression."
Grayson made it to 12 weeks before he underwent open heart surgery. Melissa and Nigel are still in awe of the medical team, who were able to patch up the largest hole between the two chambers.
"When you consider Grayson’s heart was the size of a walnut, the 8mm hole was almost across the whole diameter. What the doctors were able to achieve was just incredible."
Surgeons also performed another technique called muscle unbundling which involved shaving away some of the heart tissue.
Grayson spent 45 of the first 90 days of his little life in hospital, a time Melissa recalls as probably the most difficult. Apart from the anxiety and fear that he may not make it, Melissa says the loneliness was unbearable.
"It’s really hard going through something like this with your child and feeling so alone and under so much stress all the time. You have highs and lows and you have amazing support from family and friends but you spend so much time in a hospital room staring at the walls and feeling utterly helpless."
Melissa says that while everyone tries to understand and help, they just don’t get it. And that is where Heart Kids has been invaluable.
"I can’t imagine going through this journey without the support of Heart Kids. They have been able to link us up with other heart parents who have walked in our shoes, who have experienced what we have, and who understand exactly how it feels. That really helped us early on."
12 babies every week are born with a congenital heart defect. That is one child for every 100 births, and Heart Kids is here for them right from the start.
Families like Grayson’s, who are facing this huge challenge need support, someone nearby who can listen, offer practical advice, share information, and let them know they are not alone.
"Heart Kids has helped me personally especially through the home visits - to have someone beside you who really gets it. Someone who will just sit with me and let me cry for an hour. It’s all very well to rely on your partner, but they need a break as well. My Family Support worker has been there for me every step of the way."
Melissa and Nigel are especially looking forward to when Grayson can start enjoying the other fun services Heart Kids offer, like Camp Brave Hearts.