'Terminating pregnancy was hardest thing we've ever done'
FIRST-TIME parents Helen and Daniel Stringer had everything ready to welcome their baby into the world.
They had bought a cot and the nursery was all set for the arrival of their little boy.
But when the couple, of Roseacre, Newcastle, went for their 20-week scan, nothing could prepare them for what they were about to be told.
Helen, aged 27, said: "I thought it was just a routine scan but I was told by a nurse that she couldn't see the baby's heart and his chest wall.
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"She told me I needed to go back a week later for more tests. I wasn't too worried at that time though because I didn't know what was wrong."
A doctor from the University Hospital of North Staffordshire (UHNS) referred the couple to a consultant at Birmingham Women's Hospital's Fetal Medicine Unit for a more detailed scan.
Helen was almost 24 weeks pregnant when they received the devastating news that their baby had Hypoplastic Left Heart Syndrome (HLHS).
The condition occurs when the left side of the heart does not develop correctly.
The oldest person with HLHS lived to just 20 years old and at the moment there is no cure.
Helen, who works as a nurse at the UHNS Cancer Centre, said: "It is literally like a stab in the dark whether or not you get it. It's not a very well known disease, in fact, it's very uncommon and not a lot of research has been done.
"It was explained to us in the simplest terms and we were told that basically, because the left side of the heart is the side which pumps the blood around the body that the heart wasn't healthy."
The couple were then given three choices on what to do next.
They were told they could terminate the pregnancy, carry on with the pregnancy and wait until their baby died naturally or carry on with the pregnancy and if the baby did survive, he would have to have major open heart surgery within the first few days of his life and later on a full heart transplant.
Helen added: "We were just in shock. As a nurse I automatically see the negatives of situations, but as soon as I was told everything was fine at my 12-week scan, I just assumed everything would be OK.
"It was the hardest decision of our lives, but we had to think about what was right for us."
The couple decided to terminate their pregnancy and baby Leo arrived stillborn at UHNS on August 27.
Helen said: "We were told if our child survived, he could suffer with brain damage or learning disabilities due to lack of oxygen being pumped around the body and that his life expectancy is not known so we had to make a decision.
"A lot of people won't agree with the decision we made."
She added: "It was heartbreaking to be told that after all that time, you are not having a baby anymore."
Daniel, aged 26, a computer analyst, said: "It was up to us what we decided to do, but despite it being such a hard decision, the nurses were there and they supported us which made the whole thing that little bit easier.
"Other people have been in similar situations so they knew what they had to do to help us deal with it.
"When we heard about HLHS I knew nothing about it, I had to do my own research but the staff also gave us all the information we needed."
The couple have now launched an online fund-raising campaign in aid of Birmingham Women's Hospital's Fetal Medicine Unit.
So far more than £1,135 has been pledged which will go towards funding research into conditions such as HLHS.
Helen added: "The staff at both hospitals were absolutely brilliant.
"We set up the website for people to make donations so staff can help other babies with similar conditions.
"I would hope no-one goes through this ordeal but if they do they can rely on the brilliant care from staff at both hospitals."
To make a donation to the appeal, visit www.justgiving.com/lionheartleo.