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11th February 2015

Finding out your “healthy” baby needs open heart surgery

Nothing can prepare you for the distressing news that your baby has a life-threatening heart defect. Even more frightening is finding out that the doctors missed it and sent your newborn home with a clean bill of health. This is what happened to Vicki Marinker’s son, Matthew, who appeared to be absolutely fine when he was born in London on a rainy autumn day in 2008.

Two days later “we were discharged from hospital having had all the usual tests. We had been blessed with another healthy little boy and came home to start our new life as a family of four,” says Vicki. But at a routine health check when Matthew was two months old, Vicki and her husband Steve were floored when the doctor heard a “quite distinct” heart murmur that he said should be checked out by a specialist.

We didn’t have any concerns about Matthew’s health as he was an active and boisterous baby,” recalls Vicki. “But when I listened to his heartbeat, I could hear a swishing sound rather than a beating. We were sent to Great Ormond Street hospital for more tests and the diagnosis was quick. There was a hole in his heart that was dangerously close to a valve. If it got bigger, it could cause the blood to flow the wrong way, which could be life threatening.”

In this day and age, you may wonder how something as serious as a major heart condition can go undiagnosed. Yet every year about 3,000 babies are born in the UK with a serious congenital heart defect and like Matthew, about one-third of these babies are sent home with nobody realising their life is at risk.

Matthew had to be monitored regularly until he was about 20 months old, when he finally needed open heart surgery to repair the hole. “It was really difficult because he wasn’t ill and he was too little to understand what was happening,” Vicki says. He underwent surgery with no complications and four years on, his heart is like new.

As Vicki notes in a blog post about the whole experience, “It never ceases to amaze me how quickly he bounced back from having his chest opened and stapled back together.” Matthew’s now “a happy, slightly bonkers, healthy 6 year old, who wants to be a sandwich when he grows up,” she adds.

Tiny Tickers: detection at the 20-week scan is key

The chance of a baby’s survival is much greater if defects like a hole in the heart can be picked up during a pregnant mum’s 20-week “anomaly scan”.  But even the best trained health professionals can sometimes miss a heart defect. Factors such as the baby’s position and the mother’s weight can have an impact on detection, for example.

Jon Arnold, Chief Executive of UK charity Tiny Tickers, says that training sonographers (the people who carry out ultrasound scans during pregnancy) how to better spot any problems during the 20-week scan is key to improving detection rates. Since the charity launched in 1999, it’s trained sonographers in about 85% of UK hospitals. “We’ve already had a great impact,” explains Jon. “The detection rate was about 25% when we started. Now the overall UK rate is around 35% and, after we trained across Wales in 2008, rates there went up to around 50%. Our goal is to have the vast majority of cases detected at the 20-week scan and the rest before the baby leaves the hospital.

Now that Tiny Tickers’ training efforts are well established, the charity is expanding its horizons to raise awareness and get support from the public. For example, it’s launched a campaign called Big Tick, which gives parents advice about the questions to ask during the 20-week scan and “makes it a proper two-way experience”, says Jon.

Also, from 7-14 February, Tiny Tickers is running Heart Week 2015, where people can run fundraising activities themselves (but they’re really not fussy about the dates ‒ they’ll take help any time).

How will you play your part?