Inayah's Heart Transplant Story
Our daughter was born with her heart on the wrong side of her body
Inayah Hamdan is just five years old, but she has already undergone a heart transplant and five open-heart surgeries. Fortunately, Inayah is now smiling and playing like any other little girl but it was touch and go for a while.
For parents Jay and Talal, it has been an emotional rollercoaster that began when they found out Inayah’s heart was abnormally formed and on the right side of her body. Several of her organs were also in the wrong place, including her stomach and she also had no spleen,
They received this terrifying news during a routine 19-week scan and were advised to terminate the pregnancy.
But Jay and Talal decided to proceed with the pregnancy to try and give their daughter a chance of life.
Mum Jay recalls: “Up until the 19-week scan, we thought everything was fine. But, then the sonographer turned to me and said, 'I'm not a doctor, but there's something really wrong with your baby's heart.' That was a shock because I have two healthy kids. It was the start of a whirlwind.
“We were told many times that she might not make it through pregnancy or even through birth. But we knew we would fight this fight with her no matter what.
“My main focus was on reaching 40 weeks as I was told that would give her the best chance of survival as a baby’s heart and lungs are the last to develop properly during pregnancy.”
The family was also determined to shield their elder children, Hassan and Rajaa, from the heartbreak they were experiencing.
Jay says: “I wanted them to enjoy the pregnancy, so only at the end I told them the baby’s heart was special and she may need to stay in hospital.”
Inayah’s heart was indeed special. After giving birth, the family discovered she had Heterotaxy Syndrome, which affects around one in 200,000 babies.
“One thing we had to learn quite early on was that her heart couldn't handle stress. Every time she'd cry, she would turn blue and pass out. It was happening every hour,” recalls Jay.
Inayah spent the first three months of her life in hospital on oxygen and then had her first open-heart surgery.
Four more surgeries followed over the next three years. Mum Jay says Inayah got to know almost every doctor and nurse at Westmead Hospital in Sydney’s west.
Then Inayah developed heart failure after having the flu.
“Inayah’s immune system is compromised so she got really sick and it left her with heart failure. We were told she needed a heart transplant. It was then a matter of waiting for the call,” says Jay.
With heart transplants for children under the age of 12 only taking place in Melbourne, this was a time of huge upheaval for the family.
Jay says: “My husband Talal was not getting paid so this was a huge worry on top of the fact our daughter was recovering from a heart transplant. We also had to leave our older children back in Sydney too.”
Whilst Inayah’s surgery had gone well, she suffered complications afterward, including a cardiac arrest, and had to stay in ICU for 30 days and a further 29 days at the Royal Children’s Hospital in Melbourne. She even had to learn to walk, talk, and eat again.
“We are so thankful for her beautiful new heart and for all the amazing doctors along the way. Inayah now wants to be a heart surgeon herself when she grows up,” says Jay.
A few months on and Inayah is doing well and recently attended her first day at kindergarten. She will be on medication for the rest of her life, but her parents hope she will now live a far more normal life.
Jay says: “If you saw her before the new heart, she would be falling asleep every hour or two hours. But now with the new heart, it's just phenomenal. She's still getting there and she’s not up to where most five-year-olds are, but from where she was to now, it's a miracle.
“She tells me her new heart is making her stronger. She’s got a new lease on life. She’s so funny and outgoing. She’s the life of the party, a real princess but she’s also very mature for her age because of what she has been through. She's very resilient and very brave. I truly believe that girl will reach the stars.”
The family is now committed to raising awareness of congenital heart disease and supporting several charities including the Victor Chang Cardiac Research Institute and HeartKids.
“Our family has been through so much. We are so hopeful that research will deliver a better future for other families and that one day there might be a way to prevent congenital heart disease,” says Jay.
Acknowledgement of Country
The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.
