Tristan C with Hypoplastic Left Heart Syndrome (HLHS)

This page is dedicated to everyone who has Hypoplastic Left Heart Sydrome

My story, this was written in the daily mirror by Katy Weitz and told by myself.

Kerry Card, 27 and Ricardo 41, was delighted when she fell pregnant with her third child and was expecting a smooth pregnancy. But at 20 weeks she was given some dramatic, heart-breaking news…

I stared at the screen with horror as the doctor pointed to the place where my little boy’s heart should have been.
Instead, all I could see was a fuzzy black patch.
“I can’t see it,” I said, frustrated. “Where is it?”
“I’m afraid you’re looking at it,” replied the doctor sadly. “That place where the left hand side of your baby’s heart should be is missing. Only the right side is functioning.”

It was my 20-week scan and I had skipped into hospital, all excited about finding out my baby’s sex – now, I sat terrified and bewildered as the doctor and midwife explained that I’d have to be tested properly in Leeds General Infirmary.

Two weeks later and we were given the formal diagnosis – our baby boy had Hypoplastic Left Heart Syndrome (HLHS), meaning he only had half a heart. I listened in horror as the doctor outlined the facts.

”Your baby’s chances aren’t good,” he said. “Without a lot of open heart surgery in his first weeks of life he will die. Or you can chose to terminate the pregnancy.”

Termination was never an option so we decided to go ahead and every day after that it was a relief to feel him kicking away inside me.
“Come on, little fighter!” I’d whisper. “You can do it.”

I nearly went into early labour at 36 weeks – which would have been fatal to my unborn child – and was rushed into Scunthorpe General hospital where they managed to stabilise me. From there I was moved down to St Thomas’ hospital in London, which has all the equipment for babies with HLHS.

I spent the next two weeks in hospital being given steroid injections to help my son’s lungs prepare for a planned c-section on the 25 June 2007.

It was the longest two weeks of my life – just lying there, away from home and my children, bored and worried about the birth. Meanwhile, the doctors had discovered that my baby’s liver had pushed its way up into his chest through his diaphragm, and to top it off he also has mitral valve regurgitation (A second type of chd).

It seemed like his chances were getting slimmer by the minute but I knew deep down he was a strong boy – call it mother’s intuition but I had a feeling my little boy was going to pull through. He was given a 25 per cent chance of survival when he was brought into this world by c-section on 25 June and was rushed straight down to intensive care where he was stabilised. My partner Ricardo, 41, pelted down there after him as I lay being stitched up, exhausted and weeping on the bed.

I felt so helpless.

Then Ricardo, a car valet attendant, came in with a huge smile and photos.
“He’s okay!” he shouted. Five anxious days later we had to sign the consent forms for open-heart surgery – it’s part of a series of treatments called the Norwood procedure, specially designed for babies born with HLHS.

We wanted to go ahead with the surgery but couldn’t help feeling like we were signing his death warrant – again, he only had a one in four chance of making it through. So before he went down to surgery, the hospital pastor came and baptised him. He closed the curtains around Tristan’s bed and performed the ceremony with quiet dignity. Because he was covered in tubes and wires it took two nurses to lift little Tristan safely off the bed so I could give him a brief but loving cuddle. I wanted the moment to last forever but it was over all too soon and shortly afterwards Tristan was taken down for surgery.

Just before they wheeled him away, I touched his tiny hand and whispered: “Please fight for Mummy, son. I love you so much.”
Five hours later and the doctors emerged wearing enormous grins: “He’s done very well indeed. The operation was a success.”
The feeling of relief was overwhelming but unfortunately that wasn’t the end of it. Five days later and the oxygen in his blood was dropping dangerously low – something known as desaturation – and the doctors were forced to operate at his bedside immediately.

That day is a blur to me now, everything happened so fast. They stabilised him and three hours later we were allowed to go back in the room and there he was still fighting for his proud Mummy and Daddy.

He looked so peaceful but the fight wasn’t over yet. Four days later he started de-saturating again – the doctors came rushing in and performed lots of tests. They came to the conclusion that Tristan would need to be opened up again to make his shunt – the tube that circulated the blood round his heart – made shorter.

Four hours later the surgeons came to take him down and it was like Groundhog Day, the feelings of when he was first wheeled in to surgery two weeks previously came flooding back.

We said goodbye to our brave little boy over again, but this time my partner and me were numb – we couldn’t even talk to each other for fear of choking on our words. So we waited for three long hours and at last the doctors said he was stable and we could see him. The worst was over and finally, our son started to make great leaps forward. The tubes and machines came away, his scars started to heal and we knew we were on the homeward stretch.

It had been a hard two months on the whole family. My two kids – Sophie, 10, and Tyrone, two – stayed up in Scunthorpe with my family while me and Ricardo lived a fitful existence in the family accommodation attached to St Thomas’. Fortunately Sophie was old enough to understand but it was hard on Tyrone who hadn’t seen me for months. Thankfully, at the end of August we were transferred back up to Scunthorpe General Hospital and six weeks later Tristan was finally well enough to go home and spend time with the other kids.

Five months later he had to have another open-heart operation – stage 2 of the Norwood procedure. It felt like we had just got back to normality then we had to go through it all again! Once more we said our goodbyes in London and prayed he would pull through – although the second stage isn’t as risky as the first stage it was still frightening. Four hours passed and finally we heard word he had pulled through and once more, my little boy had climbed a mountain on his own!

He spent 3 days in intensive care and then was transferred to the ward.

A month passed and Tristan had all sorts of complications with feeding and breathing but a week before Christmas we finally got him home. I was ecstatic to have him home but we still needed a lot of visits from the nurses. I’d ordered all our presents online and we tried to have a normal family Christmas. Since then it’s been wonderful to be home with all my kids – Tristan is such a smiling, happy chap, he inspires us all. He loves watching the Fimbles on CBeebies and his personality is really beginning to come through. He can also be a right little monkey when he wants to be.

He’s now nine months and I’m so proud of him – he’s had open-heart surgery three times and every time he comes back from the brink. I call him my little Rocky because he never stops fighting. But he’s not entirely out of the woods yet – he’ll have to have another op at 18 months and when he is five he’ll go on the heart transplant register.

His future is uncertain and that’s the difficult thing for me – hopefully he’ll get a transplant at around 12 but even if he does, he’s unlikely to live long into his 20s. Of course, you never know what advances in modern medicine might offer him in the future but as things stand, I am well aware that he could die at any time and almost certainly before his dad or me.

It’s hard to look at him knowing he has a limited life and frightening too because it could come at any moment. Sometimes I lie awake listening to him breathing and if I can’t hear him I start to panic. I think: “Oh God, have I got this constant worry for the next 20 years of my life?!”

That’s why I wanted to tell my story – to encourage other parents of HLHS children or sufferers themselves to come forward and share their experiences.

One in 5,000 children are born with the condition each year but only a small percentage make it through and that’s why it’s difficult finding others to talk to.

In time I’d like to team up with other parents to try and lobby to get more research done into HLHS – to hopefully give my little boy a better chance of surviving the future.

Above all I want to share the message of hope that Tristan gives me every day.

Update January 2010:
Since this story was written for the papers Tristan has had his fontan (3rd stage norwood) at 2yrs and 6 months old. His fontan went without complications and after only 12 days he was discharged and sent home he really is a soldier in every way and my inspiration love him so much. He is now looking very pink and certainly alot better health wise, the next move now will be transplant register when hes a bit older, im absolutely dreading it but for now i can out it to tha back of my mind and enjoy my little pink cheeky chops :-) .

Wrote by Katy Weitz for the Daily Mirror as told by Kerry Card
2009 and updated January 2010

For more information about HLHS click here

Kerry Card has given CHD-UK persmission to use the photographs on this page.