A DUDLEY mum has spoken of her baby daughter’s daily battle for life and heartbreaking decisions after a devastating diagnosis.
Tiny Lily Heaton, from Milking Bank, suffers with an extreme form of Congenital Heart Defect (CHD) which is the biggest child killer in Britain.
Lily is just 16 months old but has already had two open heart operations after being born with half of her heart missing and is facing the prospect of more surgery and eventually a heart transplant.
Her mum, Kirsty Ellam, aged 24, said: “I went for a routine 20 week scan, they said everything was ok but for her heart, they could only see that she had the right side of her heart.”
After further tests Lily was diagnosed with Hypo Plastic Left Heart Syndrome which affects one in 5,000 babies, leaving her parents faced with the agonising choice of terminating the pregnancy, having the baby but no treatment and she would die naturally or palliative surgery to prolong her life.
Kirsty Ellam said: “It was devastating, a terrible time. I thought that if this baby wasn’t meant to be I would have miscarried and as long as she is alive we would do everything in our power.”
Lily had her first major operation aged only four-days-old and despite developing an infection pulled through to go home after seven weeks.
Her mum said: “We were aware of the risks but she came out fighting, we are really proud of her.
“It is something we have to deal with and if you can take them home it is the happiest time of your life. We are living with the possibility she might not wake up and every day she does wake up we are grateful.
“We have to deal with this and put our worries onto the surgeons to keep her alive.”
Kirsty and her partner Richard Heaton, aged 23, have been told their only child’s heart will eventually fail and a transplant will be needed which, if successful, will give her a life expectancy of 35.
CHD is diagnosed in 1 in 100 babies and this week (February 7 to 14) is Congenital Heart Defect awareness week where families, charities and medics speak out to help educate the public about the condition and show sufferers and their carers that they do not have to cope alone.
For more information on visit the Congenital Heart Information Network’s website at www.tchin.org or search Facebook groups for Patches or Heart To Heart to find families in the Dudley area coping with CHD.