Susan Welsh talks to a Shetland mum whose baby has undergone several life-saving operations – and isn’t out of danger yet
In five days, little Joshua Cornick, from Lerwick, will celebrate his first birthday.
But the bonnie wee boy with the winning smile won’t have any young pals there to help him blow out the candles on the cake because being in contact with other kids could put his life in danger.
For just days after his mum Natasha and dad Stephen help him open his birthday cards and presents, he’ll face life-saving surgery – again.
This brave wee soul has had a rollercoaster start to life, and in the past few months Natasha and Stephen have been on a journey that is every parent’s worst nightmare, not knowing whether their much longed-for and adored wee boy would live or die. “We spent weeks decorating the nursery and at one point I thought he’d never see it,” said Natasha, 32.
The Shetland couple married two years ago and were delighted when they discovered they were to become parents. Natasha, who has the condition Lupus, expected a difficult pregnancy but kept remarkably well throughout. At 20 weeks, they learned the baby was breech and wouldn’t turn around so it was arranged for her to have a C-section at Aberdeen Maternity Hospital.
“Because of my Lupus, I’d regular scans which showed everything to be normal, then I read an article which said a small proportion of breech babies were born with congenital heart defects,” said Natasha. “Although assured everything was fine, at the back of my mind there was a little worry.”
Joshua was born on July 16, weighing a healthy eight pounds, one ounce. “We were so happy, he looked perfect. When he was a day old, further checks were carried out and we were told he’d a slight murmur in his heart but it was probably nothing to worry about.”
Meanwhile, Natasha had picked up an infection during the C-section and became so ill she was moved to a high-dependency unit. “At that point, Joshua seemed fine and was feeding well and the main concern was about me,” said Natasha. When he was four days old, Joshua was sent for a scan.
HEART CONDITION
“I’ve no medical training but I could see straight away something clearly was wrong. Immediately we were told he had a heart condition which needed further investigation. Instead of going home to Shetland, he was being sent by ambulance to Yorkhill Hospital in Glasgow. Because I was ill, I was advised not to go so I had to discharge myself from hospital so I could accompany him,” said Natasha.
“It was a strange journey because, although he had wires attached to him, he looked absolutely fine. When the ambulance hit traffic, the blue light and sirens went on but I kept calm by repeating to myself what the doctors had said – they didn’t think it was life threatening.”
Having been seen by specialists, the news wasn’t good. Joshua’s aortic valve was malformed and required an immediate operation on his heart.
“At this point I realised it was serious, because you wouldn’t operate on a newborn baby unless you absolutely had to. We were also told his heart would never be fully well but could be improved,” said Natasha.
At six days old, he had keyhole surgery. His parents were devastated when told the operation hadn’t been successful and in a few days time he’d need to have open-heart surgery.
“Doctors said his heart was a ticking time bomb and they needed to operate straight away. This would be a temporary ‘fix’ which would last a couple of years before he’d need further operations and a life-changing operation which carried a risk of death and high risk of stroke, but if they didn’t operate there was a chance we’d lose him, so we had no choice but to go through with it,” said Natasha.
At 12 days old he went under the knife again and his parents faced a nerve-wracking seven-hour wait before being told he’d survived.
Natasha continued: “When we went to see him in intensive care, you could hardly see him for wires. It was heartbreaking and surreal as we still hadn’t had a chance to be parents. I remember looking at Joshua and wondering if he’d ever see the jungle-themed nursery we’d made at home for him.” Joshua, whose favourite toy is a rabbit called Tilly, appeared to make a quick recovery, and although underweight and with wires still attached to his heart, was finally allowed home.
“All I wanted to do was sit on the couch with my baby, and Stephen felt the same. We just wanted to be a family,” said Natasha. nd th at’s what they did as often as possible. Little Joshua gained weight and seemed fine, but at a scan a few weeks later their worst fears were realised when they learned the operation had actually failed and his aortic valve had started to narrow again.
“We were devastated as he’d already had his life-saving surgery. He’s to have a Ross Procedure, which is where his aortic valve is replaced by his own pulmonary valve. That valve is then replaced by a donor valve either from a human, cow or pig tissue which is amazing. He’ll be one of the youngest babies in Scotland to have this procedure,” said Natasha.
Joshua, who has started crawling but gets very breathless, will have the operation at Yorkhill on July 21, just days after his birthday, which will be a low-key affair for just immediate family and close friends.
Natasha said: “In these days of celebrity culture, the real heroes like Joshua’s surgeon, cardiologist and all the other staff at Yorkhill seem to be forgotten, so I’m doing what I can to raise awareness of congenital heart defects as without funding and research Joshua wouldn’t be here.”
Natasha gave up chocolate in March to raise money for the British Heart Foundation (BHF) aiming to raise £250 but has already raised more than £1,400 which will go towards making a difference to the thousands of people in Scotland living with heart conditions.”
“I can’t say how grateful we are to everybody who has helped Joshua – not just the doctors and surgeons but to everyone who has played their part in trying to give Joshua as normal a childhood as possible.”
Contact: British Heart Foundation www.bhf.org.uk