Comparable Trip

Stuff that matters

A baby underwent open heart surgery at just seven days old after doctors discovered the vital organ was not formed properly.

Christina Harmon was three months pregnant when doctors discovered her baby was facing a life and death situation.

Tell-tale signs showed his heart was not forming normally and if she even managed to carry him to full term, he would need repeated surgeries.

Little Shane has survived open heart surgeries, insertion of stents, tube feeding and complex medical care at home.

To top it off, the little fighter has gone through all of this in the midst of the Covid crisis.

Christina, 31, took a two year career break from her job as a nursery assistant in North Belfast, determined to get her youngest son through his toughest days.

She added: “When I look at him now it’s almost impossible to imagine what he’s been through. But he’s a little fighter and I know he’ll always be that character, calm and happy.

“He was so vulnerable when he was born. We were flown to Birmingham Children’s Hospital when he was just four days old and when he was seven days old he underwent open heart surgery.

“He had another surgery in July and will need more but he’s doing really well and taking it all in his stride.”

When Christina left her home in Oldpark, Belfast, for her three month scan at the Jubilee Royal Maternity Hospital, like any expectant mum, she hoped everything would be fine.

But fluid around her baby was a sign his heart was in trouble and when he was born six months later surgeons discovered his heart was not completely formed, meaning he just had one pump working blood around his system instead of two.

At four days old he was flown with his parents for specialist care at Birmingham Children’s Hospital and then spent a further two weeks in the care of the Royal Victoria teams in Belfast.

And at age five weeks, Christina was able to take her boy home.

“I just knew when I got him home he’d get better faster,” she said.

“When we got back from the Royal I didn’t want anyone near him or me in case he got a sniffle. And then when Covid hit, we were really isolated but to be honest I cherished it.

“If there’s one positive thing to come out of Covid, it’s that it gave me the chance to isolate and protect Shane and keep our family safe.”

Christina said the family had a telehealth system set up in their home, enabling them to attend Skype appointments with Shane’s nurse Rosie every Wednesday.

“She had a huge monitor at her end and could see him clearly, she examined him, and answered all my questions. It was like having a personal service in our home and it gave me so much comfort and security without having to risk going into a hospital setting.”

The Clark Clinic at Belfast Children’s Hospital introduced video conferencing in 2007 to help in the post-operative care and monitoring of babies and small children with major congenital heart conditions.

And for the last two years, the Hospital Services Ltd team has worked with the HSC Board to jointly develop the service to make it scalable and allow mums like Christina to have the system in her home.

The technology means Clark Clinic doctors can monitor patients and perform emergency care consultations from the comfort and safety of their own homes throughout the year and in particular, during the pandemic.

Christina said: “The telehealth system went back to Clark Clinic two weeks ago because we don’t need it now and other families do. It was a godsend for us.

“Today Shane is thriving and I’ve so many people to thank, from the amazing surgeons in Birmingham to the staff at the RVH to the telehealth team, our nurse Rosie and our family who looked after Ronan and made sure we’d plenty of groceries and love.

“When I was told there was a problem with Shane’s heart I thought I would keel over. I’ve never been able to share the really gruesome pictures of how he looked after his surgery. It was so distressing.

“But we’re here to tell the tale and I want other families going to understand the best thing I did was get organised. I made lists for everything, cleaning and disinfecting the house, a diary ready for every question I had, I accepted every bit of help, took every bit of advice, and we lived like life was totally normal although it was anything but.

Christina said the family was very well supported by the Children’s Heartbeat Trust Charity, which worked alongside Clark Clinic.

Shane turns one on December 30. His mum said in that year “we’ll have lived a lifetime together and we’re ready to face another year”.

“I know if we can face this we can face anything. So if you have a moment like I did when you think there’s no hope, take a moment, take a breath, take the help and take another step and you’ll get there.”

The Children’s Heartbeat Trust provides emotional and financial support for heart families throughout Northern Ireland.