Mother tells of agony at waiting for someone else’s baby to die so her desperately ill tot can receive a new heart
A MOTHER has revealed her agony waiting for her baby boy to receive a life-saving heart - while knowing it must come from another sick child.
Little Benjamin Rayner was given a "non-existent" survival rate after being born with hypoplastic left heart syndrome, and has been on the urgent waiting list for a replacement since he was three-days-old.
The tot, whose condition means only half his heart is working, is now six-months-old, with his determined mum Ashley Hardy saying it was her “life dream” to help her son find a heart.
Speaking to the Sun Online, the mum said: “He has been on the urgent list for a transplant from three days old.
“We were told you just have to wait for a heart – there aren’t many baby hearts, and it kills us everyday thinking about where it would come from.”
The 31-year-old said her son had been diagnosed with the heart condition when she was just 24 weeks pregnant, having only been able to hold him for a minute after he was born before doctors whisked him away for treatment.
The tot was born at Royal Victoria Infirmary in Newcastle on August 1 last year, and has already undergone four major operations in his short life already.
Hypoplastic left heart syndrome occurs in up to four out of every 10,000 live births.
Ashley, her partner Dave Rayner and two eldest daughters are now fighting to give their little boy the best chance of survival.
She said: “We were gutted, everything was turned upside down when we found out about his condition.
A heart condition babies are born with that is often fatal
Hypoplastic left heart syndrome is a condition where the left lower pumping chamber (left ventricle) of the heart does not develop properly so is much smaller than usual.
The valve between the left ventricle and the upper left filling chamber (left atrium) is often closed or very small.
And the main blood vessel that carries blood from the heart to the rest of the body, called the aorta, is also smaller than usual.
This means that the heart is unable to pump blood around the body effectively.
Hypoplastic left heart syndrome is a form of congenital heart disease, meaning it develops before the baby is born.
The cause is unknown.
Symptoms:
Babies born with this condition are seriously ill as soon as they are born.
Symptoms include:
- greyish/blue skin
- difficulty breathing
- poor feeding
- cold hands and feet
- unusually drowsy and inactive
- weak pulse
Without surgery hypoplastic left heart syndrome is fatal, usually within the first few weeks of life.
With treatment many babies survive but may experience other complications like heart rhythm abnormalities fluid build-up on the lungs and blood clots later in life.
“His survival rate was non existent but we decided we weren’t going to let him pass away, we were going to fight.”
She appealed for people to join the Organ Donor Register, with heart transplants giving at least 50 per cent of patients an extra ten years.
According to the NHS Organ Donation and Transplantation Activity Report 2016-2017, around 50,000 people are alive today thanks to organ donation.
According to analysis by , there were more than 6,388 patients waiting for an organ transplant in 2017.
MOST READ IN NEWS
In many children, HLHS occurs by chance, with no clear reason evident for the underdevelopment.
Currently, if you wish to donate your organs, you need to join the NHS Organ Donor Register or tell a relative or close friend that you wish to donate.
To register, fill out a, which takes around two minutes to complete.