Charlene and Graham Hutchison were over the moon when they found out they were pregnant with their first child – but five months in, the pair were given life-changing news
Parents of newborn reveal the ‘crushing’ ordeal they faced
The parents of a newborn suffered a “crushing” ordeal after being told their baby only had a 15% chance to live due to two extremely rare heart conditions.
Charlene and Graham Hutchison were over the moon when they found out they were pregnant with their first child. But five months in, the pair attended their 20-week scan and were told their unborn baby had a rare combination – 1 in every 200 million globally – of two serious heart defects, with just a 15% chance of survival.
The couple, aged 39 and 42, said: “Our whole world instantly crumbled”. Graham, a fund accountant from Edinburgh, added: “Charlene was in floods of tears and I clutched onto the bollard outside the hospital, just screaming. Devastated isn’t enough to describe how upset we were.
“But our baby was a gift. We were determined to give him the best chance at life on his own terms. Even if that meant risking losing him while trying.”
The dad, who shares three step-children with Charlene, says the pair immediately had a bad feeling when they were referred for a second scan. During the appointment, doctors broke the life-changing news that their unborn child had interrupted aortic arch (IAA) and transposition of the great arteries – both rare heart defects that they were told couldn’t likely be repaired.
He said: “The change in the atmosphere was palpable. We were told it was unlikely surgeons would ever be able to make his heart work properly. It wasn’t clear what life would look like for him after birth – and if he’d even survive. The fear about what would happen was all consuming. Looking back, I’m not sure how we got through it all. But we tried to carry on with life as normal for our other kids.”
Graham and Charlene paid for a 4D private scan at 32 weeks to see their son. At this stage, all treatment options would’ve been life-limiting and so terminating the pregnancy was suggested. Not giving up hope, they agreed for him to undergo a gruelling 18-hour open heart surgery only one week after he was born on March 21, 2024.
He remained in hospital for over six months before he was allowed back home. Now, little Albert has celebrated his first birthday and is expected to make a full recovery – but the emotional and financial toll hasn’t been easy. Financially, the couple have been left struggling to make ends meet at times due to a lack of support from employers and the Government.
Emotionally, it’s been even more difficult to come to terms with Albert”s condition. Graham added: “The strain of our baby’s life hanging in the balance for hours on end and then for days, weeks, months afterwards is something I don’t think we’ll ever fully get over. We just count our blessings that Albert has come through it all and that he won’t remember any of it.
“He’s also had a number of airway issues to deal with since, but right now, we feel elated. Taking him into his home for the first time was, without a doubt, one of the best moments of our lives. He’s still tube fed overnight, but he’s able to move and talk like any other child his age.
“At the moment, things are looking positive. Mr Peng and his surgical team performed a miracle with my son. Our baby owes him his life and no words can express our gratitude to him. More needs to be done to recognise the impact on parents of having children critically ill in hospital for a prolonged period of time – and more support is needed.
“No family should ever have to suffer financially as a result of having a child in hospital. The most important advice I can give to other parents who find themselves in a similar position is to trust your instincts. Nobody knows your baby like you do. We could have never imagined the extent to which we would have been involved in such critical medical decisions.
“The outlook for Albert and our family could’ve looked very different had we not decided to give him a chance. Now, we’re embracing having our smiley, happy and healthy little boy around.”
