NICHS | Karen and Robin’s Story
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Karen and Robin’s Story

26 Feb

Karen and Robin from Lisbane, just outside Comber, say they have been on an “emotional rollercoaster” after doctors broke the news in October that their unborn baby has congenital heart disease.

The couple found out after a 20–week scan that their baby, due in March, has a condition called a double inlet left ventricle.
Babies born with this condition have only one working pumping chamber
(ventricle) in their heart. They have been told that their child is likely to face three major heart surgeries – one within days of being born.

But the couple say thanks to the support from the medical team at the Royal
Victoria Hospital for Sick Children they are hopeful for the future.

Karen explained after experiencing complications during a pregnancy last year they were anxious about their first scan. “I was so nervous. And during the 20–week scan the problem was detected. They told us that from what they can see the heart hasn’t developed properly.”

Robin added: “We were just: ‘What does this mean?’”

The couple saw a consultant within 24 hours who confirmed the diagnosis. It is the same condition as Baby Joe from Larne. In August he underwent surgery aged just six days old.

Karen said they were just left “completely shell–shocked”.

Robin said: “When you are told that there are between six and eight babies like this born a year in Northern Ireland with this specific condition you just ask:
‘How can this be?’”

Karen said she was also asking ‘why?’ “I did not do anything different with this pregnancy than when I was pregnant with our first child.”

They said they have been overwhelmed by the support from the Children’s Hospital at the RVH.

Robin described feeling helpless. “But that was the thing with the Royal – they make you feel empowered. They are great like that. Our whole attitude has turned around now. When you understand what is happening to your child you can cope with it so much more because you know what you have to face.”

Karen says both her and her husband strongly support the ‘Help our Babies Hearts’
appeal. “It is an important piece of research. We are planning to hold a special fundraiser in February. And reading other people’s stories including baby Joe’s made us feel so much better – that you are not on your own.”

Please support the Baby Hearts Appeal with a donation today. Together, we can give babies the healthy hearts they deserve – and save many, many lives.

Thank you.

If you would like to support us, you can set up a small, regular monthly gift or give us a donation today.

To help our Babies’ Hearts Appeal with a regular monthly gift, please click here to set up a direct debit.

If you would like to make a donation today, please click on the yellow Donate button.

£25 could help pay towards the recruitment of a family for the research study.

£50 could help cover the costs of the cardiac nurses’ support for the study for one week.

£250 could help cover the costs of the cardiac nurses’ support for the study for one month.

£1000 could help pay for the Baby Heart’s Study for one week.

£5,000 could help pay for the Baby Heart’s Study for one month.


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