A heartbroken couple say they feel ‘blessed’ to have had the chance to enjoy a final few weeks with their toddler, who died while waiting for a heart donor.
Nicola Lomax and Michael Williams, of Coulson Court, Luton, said goodbye to their 20-month-old twin daughter Kyla for the last time after being forced to make the unbearable decision to turn off her life support machine.
At the time Kyla had been in the Evelina Children’s Hospital (London) for four months, battling against a number of serious heart conditions which developed in the early months of her life.
On October 29 the toddler went under the knife and was given a ‘Berlin’ artificial heart, but a week-and-a-half later she suffered a stroke.
Kyla’s condition worsened after a seizure on November 15 and she was induced into a coma and placed on life support.
She sadly died three days later.
Despite the tragedy, Nicola and Michael have told the Herald & Post they will always be thankful for the final weeks the Berlin heart gave their child.
Michael, 38, said: “It got to the point where they said we could leave it for a bit longer but it just seemed so cruel.
“If you look at pictures for almost six months she was stuck on machines and any mother or father does not want to see that, it’s like living in captivity.
“People have said they don’t know how we could make that decision but it was one of the easiest decisions we made through the whole situation.
“She gave a good fight and that last smile that we wanted to see, we knew that was her time because she had been through so much.
“I’m eternally grateful we had those weeks with her.”
Kyla’s most serious condition– dilated cardiomyopathy (DCM)– meant that the toddler’s heart was enlarged and squashed against her wind pipe, stomach and lungs.
The one-year-old also suffered from restrictive cardiomyopathy, left ventricular non-compaction and mitochondrial disease complex IV– a combination of conditions which compounded the need for a heart transplant.
Kyla was given the Berlin device to bridge the gap before surgery, but a donor was never found.
Nicola, 29, said: “It gave us that opportunity (to say goodbye).
“She had not been well for a long time but she was then able to play, laugh and try to talk.
“It was so nice.
“She was on the urgent list for a heart and we hoped that one would come forward in time, but it didn’t.”
Michael added: “It was only short the amount of time she was on it but that little time was beautiful.
“It was short, but sweet.”