Dundee dad thanks charity that helped detect his unborn daughter’s heart defect

Aman Bailwal and his wife, Madi, from Dundee, were excited to learn the gender of their first child at their 20-week scan in November last year.

But they were shocked when at the scan, the sonographer identified possible issues with their baby daughter’s heart.

Subsequent scans confirmed their unborn baby had a condition called Double Outlet Right Ventricle (DORV), which would require open heart surgery shortly after birth.

Aman, 30, says: “We thought we’d find out if we were having a boy or a girl and how amazing it would be. It was really exciting.

“When they detected the heart issue, they weren’t exactly sure what it was.

“We were told even in the best case, we were looking at open heart surgery; the worst case was multiple open heart surgeries with a pretty low rate of survival.

“That was a big shock. It really hit us hard and it took us a bit of time to process.”

‘She didn’t present any symptoms’

DORV occurs when the pulmonary artery and aorta — the heart’s two major arteries — both connect to the right ventricle. The aorta should connect to the left ventricle.

It causes problems pumping blood through the body and can lead to heart failure.

Madi and Aman had periodic scans to monitor their baby’s progress in the lead up to her birth.

And the family are grateful for the early detection of her condition, as when Alina was born in March this year, she presented no symptoms of any heart problems.

Aman continues: “Madi had to have an unplanned C-section because Alina’s heart rate was through the roof early on in the labour process.

“When she was born, she got amazing care, but didn’t present any symptoms of a heart problem.

“So, if they hadn’t picked it up in the 20-week scan, she probably would have been sent home and we might not have noticed anything. The early detection was really important for her.”

Surgery

Sadly, Alina deteriorated very quickly after birth and ended up back in hospital within a week of being taken home.

Aman explains: “Her resting heart rate was very high so she was having to work very hard to breathe.

“She couldn’t feed properly because it was exhausting for her, and she was unable to put on weight because of that.”

Alina had open heart surgery at just seven weeks old to repair the issue.

Aman continues: “When she was in surgery we floated through the day. It was like we were there but not really present.

“It felt like it took her a while, but recovery was actually really quick. She did amazingly well. She’s off all meds and feeding support.

“She has her periodic heart check-ups, but she’s doing really well. We’re very fortunate and grateful.”

Charity support

Alina’s happy ending is partly due to Tiny Tickers – a charity improving the detection, care and treatment of babies with serious heart conditions.

According to Tiny Tickers, one in every 125 babies is born with a heart problem but only around half of those are spotted during pregnancy.

And more than 1,000 newborns leave hospitals in the UK every year with no one realising they have a potentially life-threatening heart condition.

Because of training provided by Tiny Tickers, the sonographer at Ninewells was able to identify Alina’s heart condition at her 20-week scan.

And thanks to a grant from Northwood Charitable Foundation, Tiny Tickers has also been able to place 13 pulse oximetry machines across Ninewells, Perth Royal Infirmary and Kirkcaldy’s Victoria Hospital.

The machines can indicate heart or respiratory issues quickly by measuring the level of oxygen in the blood.

‘Alina’s story could have been so different’

Aman says: “The fact the sonographer was able to identify a heart issue, meant Alina had a much better chance of surviving.

“If it hadn’t been found then, it probably wouldn’t have been detected at birth because there was nothing to indicate a problem.

“We would have taken her home and wouldn’t have known anything was wrong with her.

“Alina’s story could have been so different without all the amazing work these guys do.

“Many babies do go home without knowing they have a serious heart defect.

“So, having trained sonographers and machines saves babies’ lives and makes their lives better.”

• Aman is fundraising for Tiny Tickers. You can find out more on JustGiving.
• For more information about Tiny Tickers, visit their website.