Video: What if three of your family have congenital heart disease?
Three members of the Symonds family live with heart conditions, but they help one another
through the toughest times, as they tell Sarah Brealey.
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How do you cope when your child has a heart defect? Even worse, what if your second child is also born with heart defects and then your husband needs urgent heart surgery? Anna Symonds has been tested by all these scenarios. “It’s amazing what you can cope with when you have to,” she says.
Anna and her husband Edward, from Weston-Super-Mare, had been trying to have children for 10 years.
“Even though we were told I would never have children, we kept our fingers crossed that one day we would,” says Anna, now 36.
In 2011 she was overjoyed to find she was pregnant. But 10 weeks later the couple lost the baby. “Our world shattered,” says Anna. “We thought that had been our one chance,”adds Edward, 43. But the following month, Anna fell pregnant again. Surprise, joy and sadness were intertwined for the couple.
Starting a family
They tried to put aside fears of a miscarriage. When Thomas was born in September 2012 it felt like “a blessing”. But Anna knew something was wrong. “In hospital he didn’t want his bottle,” she says. “He seemed to struggle.” At 10 weeks, the GP spotted a heart murmur and
sent Thomas for urgent tests at Bristol Children’s Hospital.
There, the specialist broke the news that Thomas had two holes affecting different chambers of his heart (an atrial septal defect and a ventricular septal defect). He would need surgery to repair them. “It was a relief to know what was wrong, but we were so sad,”says Anna. “Our 10-week-old having to face open heart surgery was hard to accept.”
Congenital heart disease (a heart problem you are born with) is diagnosed in around 12 babies each day in the UK, with more diagnosed later in life. Estimates suggest that it affects 1–2 per cent of the population.
In the 1950s, the majority of babies diagnosed with a congenital heart condition died before their first birthday. Today, thanks to advances in treatment and care, much of it funded by the BHF, eight out of 10 live to be adults.
Doctors wanted Thomas to get bigger before he had surgery, but within a couple of weeks he was so ill he needed to return to hospital. He stayed there for 10 weeks before the operation, which was a success.
This Christmas, the British Heart Foundation will be running a media campaign to raise awareness of how congenital heart disease affects children and their families across the UK. As part of this, we’re asking parents about their experiences and the challenges they face.
If you’re the parent of a child with congenital heart disease, we’d be grateful if you could spare a few minutes to complete our anonymous survey.
Second time around
Anna and Thomas were keen to know if future children would be affected. “We were told we would have about a two per cent chance of another child having a heart condition,” says Anna. “Our minds were put at ease.”
When Thomas was nine months old, they were thrilled to learn they were expecting again. Early scans seemed fine, but at 16 weeks, the couple learned their unborn son had multiple heart defects and probably wouldn’t survive.
When he was born, he was taken to intensive care. “We named him Nicholas Henry Symonds, or NHS for short,” says Anna. “He was so beautiful.”
We named him Nicholas Henry Symonds, or NHS for short...he was so beautiful.
Nicholas has had three operations. He’s due to have one more once he’s bigger, but his heart defects are too complex for surgeons to fix completely.
Having been told Nicholas wouldn’t make it to his first birthday, the couple take each day with him as a bonus.“I do feel scared, but we’re confident in the doctors and we know they will do the best for him,” says Anna.“We just have to be positive.”
The couple were at home with their toddler and new baby when a fall at home led to Edward having a chest X-ray.
Doctors spotted that he had an enlarged heart. Edward had suffered from unexplained headaches for years; it turned out he too had an atrial septal defect and needed open heart surgery, like his two sons.
“It was a bit of a surprise,” says Edward, “but in some ways after everything we’d been through with the boys, it made a kind of sense.”
Edward went into hospital on 22 December 2014. “He was in hospital over Christmas, which is hard when you have young children,” says Anna. “It was Nicholas’s first Christmas and Thomas was under three. Christmas Day was hard. I took them to my mum’s so I could go and spend a bit of time with Edward.
“When he came out of hospital, our family helped us. Edward and the boys all needed help, but we managed. It just shows that you can do it if you need to.” Edward was off work for 10 weeks following the surgery.
“Anna had three of us to look after, which was hard for her,” he says. “I couldn’t do much in terms of lifting and carrying, so I felt a bit guilty. “I tried to do what I could, like doing the washing up, but I couldn’t chase the kids around or play with them much. I was told that I wasn’t allowed to pick them up, which was really hard to stick to when one of them needed a cuddle.”
Edward had a few weeks of discomfort after the surgery, but says it was worth it. “My headaches disappeared straight away,” he explains. “I feel good now and there are no real problems with my heart. They found that my heart function had deteriorated significantly, so it’s a good job they did the operation when they did.”
Edward wants to encourage others to seek help if they think something might be wrong, even if it’s just breathlessness. “A lot of people are afraid and don’t want to go to the doctor,” he says. “Don’t put it off; get yourself looked at.”
Only after their children were born did Edward find out that two of his father’s siblings had heart problems – one who died in infancy and one stillborn. The family are waiting for genetic test results, which they hope will offer more answers.
“We want Thomas to know the possible risks, in case he wants to have children in future,” says Edward. Although they’ve been through more than most families, they take some comfort in having been through it together.
“I’ve talked to Thomas about the fact I had the same kind of heart problem as him,” says Edward. “Nicholas is a bit young for us to explain it, but he’ll point to my scar and say ‘daddy scar’ and point to his scar and say ‘me scar’. Then Thomas will pipe up and say ‘me scar too’.”
I've talked to Thomas about the fact I had the same kind of heart problem as him.
“It helps that the boys have seen I have been through it too and I’m OK. We are stronger together.”
Edward is now back at his job at a legal firm, who he says have been “really understanding". Anna gave up her legal job to care for her sons, but works in a supermarket two nights a week, when Edward can look after the boys.
Edward’s advice for other parents of children with heart problems is: “Just do what you can and try to make the best decisions for you and your family. “I know it is difficult, but try not to be afraid. Trust in the health teams around you. They saved Nicholas’s life, they saved Thomas’s life, and without them I don’t know if I would be here.”
“We want to tell people that the BHF needs all the money it can get,” says Anna. “Without the research that the BHF does, our boys wouldn’t have survived till now. We want to give thanks for all the research that has been done and will be done, and for all the medical people who’ve done so much for us.”