Parents speak of anguish at losing baby Harper
11:02am Wednesday 11th September 2013 in News
Harper Lewis, here pictured around 17 days old, was born without her right forearm because of a lack of blood circulation
A MOTHER and father from Cwmfelinfach have spoken of their anguish at losing their daughter to a rare heart condition aged only 19 days old.
Harper Lewis died at St Michael’s Hospital in Bristol, after being born with a rare heart condition.
At 32 weeks, doctors discovered Harper had a triple aortic aneurysm. She was born at 36 weeks and four days at the Bristol hospital on April 19 weighing 6lb 10oz.
She died on May 8
At birth, Harper received cardiac massage to resuscitate her, and she was born without her right forearm due to a lack of blood circulation from the heart.
Although doctors were initially very optimistic of her chances of survival, the seriousness of Harper’s problems soon became clearer.
Scans, images and test results were sent to Great Ormond Street Hospital in London and then to Johns Hopkins University in Baltimore, USA, for assessment – but no cure was found.
Mum Natalie Lewis, who also has a two-year-old daughter, Addison, with her husband Kris, said: “We didn’t expect to have her for long, if at all. We just had to hope for the best and hope something or someone would find a miracle for her. It was the most traumatic time ever; you cannot compare it to anything.”
Mr and Mrs Lewis both work for the Royal Navy and will be moving to Gibraltar in the next few days for three years. The couple got married in Pontllanfraith near Blackwood in March 2012.
“If I didn’t have [Kris and Addison] I am not sure how I could get through this,” added Mrs Lewis.
“It was such a rare disease. I don’t know what we would have done without Addison, but children have a way of getting you through hard times. She is the reason I get up in the morning.”
Dad Kris, who was born and bred in Cwmfelinfach, added: “When we were at the hospital, there must have been 50 or 60 ill babies and all the staff had to support the families. It’s like a conveyor belt of misery at that place, but the work they do is phenomenal.”
Mr Lewis was among 17 friends and family members from Cwmfelinfach who took part in the Welsh Three Peaks Challenge last month to raise money for the hospital where Harper died.
They climbed the three mountains of Snowdon, Cadair Idris and Pen-y-fan on Saturday, August 24, in 17 hours.
Mrs Lewis also travelled with the walkers between the treks and provided them with dry clothing after a downpour of rain on Snowdon.
The money raised will go towards The Cots for Tots Appeal which supports the Bristol hospital’s special care baby unit.
Mr Lewis said: “This was something for us to concentrate on and to keep our minds focussed. We know they are a purely charity-funded organisation.
“My friends felt a bit useless at the time, like there was nothing they could do for us. It’s nice for them to get together and do this for us. There’s a real close-knit community here.”
Mr and Mrs Lewis would like to thank all their family and friends for their heroic efforts during this challenge and for their support over the past six months. The sponsorship total is looking to exceed the target of £7,500 towards St Michael's Neonatal Intensive Care Unit.
You can donate here https://www.justgiving.com/Harperlewis/
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