Zachary’s story

This is one-and-a-half-year-old Zachary. He was born in May 2022 with a shrunken brain, epilepsy, and tetralogy of Fallot, a congenital heart condition involving four abnormalities occurring together, including a defective septum between the ventricles and a narrowing of the pulmonary artery.

Zachary’s parents, Tash and Harrison, were alerted to their son’s heart condition, called Triology of Fallot, at their 20-week scan. They were warned that Zachary may not even survive the birth, but at 37 weeks Tash was induced with a team of neonatal doctors and a resuscitation team standing by to save Zachary’s life. An air ambulance was also on standby ready to transfer Zachary to Bristol for emergency life-saving surgery.

Zachary did exceptionally well at first. He was born breathing on his own, and his heart was stable. But the calm was short-lived. Tash and Harrison only got to enjoy their newborn at home for a week before Zachary stopped breathing. Tash performed CPR on Zachary and managed to revive him in time for paramedics to arrive. He spent 10 days as an inpatient at the Noah’s Ark Children’s Hospital for Wales and was treated for Rhinovirus which had caused his heart to stop.

Just a few months later, Tash had to perform CPR on Zachary again. This time he tested positive for coronavirus and spent a month at the Noah’s Ark Children’s Hospital before making it home just in time for his first Christmas. But over the new year, Zachary started having seizures. After further investigation, he was diagnosed with a shrunken brain and epilepsy.

Shortly after his first birthday, Zachary underwent a 10-hour procedure at Bristol Children’s Hospital to repair his tetralogy of Fallot. The hole in his heart was closed and the narrowing of his pulmonary artery and airway was corrected.

Tash says: “We had geared ourselves up for bad news. We never expected it to take as long as it did and so when they phoned to say the surgery was done, I couldn’t believe he was alive. After almost 12 hours we were finally allowed to see him. He was not the same boy I had taken to hospital. He was swollen and blown up like a balloon and there were so many wires coming out of him, you could almost not make him out.”

Zachary spent six days on the intensive care unit and another four days on high dependency in Bristol before being transferred back to the Noah’s Ark Children’s Hospital where he spent a further three weeks recovering on Pelican Ward.

Zachary is now a thriving toddler and hasn’t had an inpatient stay since. He receives almost weekly checkups as is under the care of numerous specialties, all housed under one roof at the Noah’s Ark Children’s Hospital for Wales.

But the psychological trauma of having a very sick child has never left Tash, and though Zachary is now a happy toddler, she still struggles to cope with the emotional impact of her experiences. Tash says: “I think emotional support services would have really benefitted me during the time that Zachary was undergoing major heart surgery. Even now we are still suffering, especially me. I find it hard to be happy, I find it challenging to come to terms with everything that’s happened over the last year, and have PTSD as a result.”

As a result of their own experiences, Tash and Harrison are supporting our Christmas appeal, Here for You. Money raised from the appeal will fund emotional support for families going through the most difficult of times in the form of counseling, music, and art therapies.
Tash says: She says: “I think emotional support services would have really benefitted me during the time that Zachary was undergoing major heart surgery, even now we are still suffering, especially me I find it hard to be happy, I find it challenging to come to terms with everything that’s happened over the last year and have PTSD as a result.”