Having your first child can be a daunting prospect for any parent. But before her son was even born Natasha Browning knew he would lead a different life from most children. When the Cardiff mum was 22 weeks pregnant with her son, Zachary, now five months old, doctors confirmed that he had a rare heart condition called tetralogy of Fallot (TOF).
“I had never, ever, heard of it. I literally went home and googled it with my partner for probably about half an hour during the day each time I thought about it,” Natasha, 26, said. “I had heard of holes in the heart and other conditions but never tetralogy of Fallot. It’s quite a complex condition.”
Tetralogy of Fallot is a rare combination of several defects. These include:
ventricular septal defect – a hole between the left and right ventricle
pulmonary valve stenosis – narrowing of the pulmonary valve
right ventricular hypertrophy – where the muscle of the right ventricle is thickened
overriding aorta – where the aorta isn't in its usual position coming out of the heart
READ MORE: The Welsh woman who's become the role model she never had growing up with cerebral palsy
As a result of this combination oxygenated and non-oxygenated blood mixes, which causes the overall amount of oxygen in the blood to be lower than normal. This can sometimes cause the baby to appear blue. Zach lives with a medium-sized hole in his heart and requires medication to keep the blood pumping around his body as one of his arteries is thicker. Zach’s condition can cause low levels of oxygenation which can cause him to appear grey, lifeless, floppy, and blue.
“We need to act on that straightaway with regard to putting him in the recovery position,” Zach's father, Harrison, said. He added that, when Zach was born, he was immediately put into intensive care. “They wouldn’t discharge us without us knowing basic life support in the event that, if he has a spell, we need to act on what’s going on with regard to the life support.
“It’s been very difficult for me and Tash but we’ve got to be supportive to both one another and the family. It’s difficult in a sense knowing the fact your own son, or daughter for that matter, had a condition where if they don’t go for surgery, as the hospital confirms, he won’t live to see his first birthday.”
Zach has to take propranolol three times a day, eight hours apart, and won’t be able to come off the medication until he is reviewed after receiving surgery in Bristol. The medication helps Zach's blood to flow through his heart correctly.
“He’s such a little fighter – he’s been through so much. He’s been resuscitated three times in his life already. He’s five months old and he’s gone through so much,” Natasha said. “His condition is very complex. He can’t have more than two minutes of play time so all of that has to be timed. He can’t get overwhelmed if I’ve got a guest here and he’s been interacting with them. If he’s smiling too much or he’s sick I have to immediately take him away because he can’t cope with it.”
Zach’s parents say that the nature of his condition means crying could also put him at risk and that the only time that they’ve heard him cry was the moment he was born. Sometimes babies who have TOF will suddenly develop blue skin, nails, and lips after crying, feeding, or when they are agitated, caused by a rapid drop in the amount of oxygen in the blood.
“If he grizzles or gets upset we’ve got to work out what he wants, what he needs. The way he behaves we’ve got to watch, the way the pram is pushed – we can’t just push him up the kerb, we have to lift him up onto the kerb,” Natasha explained.
Zach requires life-changing surgery that will see him be away from his parents for around six to seven hours with the surgery expected to take approximately four hours. Harrison said the family expects to spend around two weeks in hospital but that this could be longer depending on Zach’s strength afterwards.
“It’s very emotional for both me and Natasha. Not just for us – we’re his parents – but for the whole family. To be told that if we advise against surgery he won’t last until his first birthday,” Harrison said.
“Imagine being told that your child won’t survive until their first birthday if they don’t have the surgery. It’s horrific to even think about,” Natasha added. Zach is closely monitored by the hospital and is visited every week by a health visitor. Recently Zach had to be taken into hospital and resuscitated after falling ill and losing consciousness. He spent four days in the high-dependency unit at the University Hospital of Wales before being sent home.
“There’s an incredible amount of people in Zach’s life with the doctors and nurses, the care workers, paramedics, and a health worker. Every one of them has been so involved in Zach’s life that it I phoned them now they’d answer me. We as a family would like to thank the staff so much.”
For Zach the surgery he requires would be life-changing. “He’ll get a life rather than being wrapped in cotton wool,” Natasha said, who hopes that the surgery will give her son a sense of normality during his childhood. Once Zach is a teenager or in early adulthood he may require further surgery. “He certainly won’t be free of his condition, he’ll always have that, but it might mean he’s not on medication anymore or has to be watched 24 hours a day.”
Natasha describes Zach as a “rainbow baby” having previously had a miscarriage before she became pregnant with him. Shortly after she found out about her pregnancy she said her grandfather was diagnosed with cancer.
“He knew about Zach. He saw photos and videos of Zach’s heartbeat. It brightened his day a lot and made him smile,” Natasha said. Sadly Natasha’s grandad died before Zach was born. “We call Zach a ‘rainbow baby’ because after every storm comes a rainbow and we got ours.
"We call Zach a rainbow because we had a little storm in our lives and that storm had to end. As they say, after one life ends another begins and Zach’s life began. I know his great-grandfather would be so proud of him.” Natasha’s grandfather was a pigeon racer and drove tractors and hopes her son will be able to follow in his great-grandfather's footsteps.
“We’re so extremely proud of our little boy. He’s such a fighter and we couldn’t be more proud of him than we already are. The things he goes through, he wakes up with a smile on his face and goes to bed with a smile on his face. He’s just incredible,” Natasha said.
READ NEXT:
