A newborn baby who needs a new heart has already had nine surgeries, more than 20 blood transfusions and two cardiac arrests.
Six-week-old Charlie Douthewaite is the youngest patient on the transplant waiting list after doctors discovered a rare defect in his 20-week scan.
A shunt was fitted in the youngster’s heart at just three days old but just four days later he suffered his first cardiac arrest and has been on life support ever since.
Parents-of-three Tracie Wright, 30, and Steven Douthewaite, 32, were told three weeks ago he needs a new heart.
Full-time mum of Fenham, Newcastle, said: ‘When we found out Charlie had hypoplastic left heart syndrome (HLHS) at his 20-week scan we were absolutely devastated.
‘We were in total shock, especially after having two other pregnancies without any complications.
‘Watching your child suffer is every parent’s worst nightmare.
‘He has endured more in such a short time than most adults could. It’s terrifying.
‘We’ve stopped living for tomorrow, we just have to focus on today. Every hour, every minute things can change so we just treasure every moment we get to spend with him.
‘Finding out Charlie would need a new heart was horrendous. It’s sickening to think another baby will have to lose their life to keep our baby alive.
‘But whoever that baby is will be giving the most amazing gift, the gift of life to our Charlie. They will live on in him.’
HLHS is a congenital heart disease that causes abnormal development of the heart before birth.
Tracie developed obstetric cholestasis – a pregnancy related liver condition that can be toxic to babies if they are taken to full term – and was induced at 38 weeks.
Charlie had a hole in his heart between two chambers and underdeveloped valves that were small and leaking and he can not come home until he gets a new heart.
Tracie does the two-hour round trip to her baby’s bedside every day.
She said: ‘Going through labour was so scary, I was absolutely terrified.
‘When he came, he had to be taken away straight away.
‘Steven and I didn’t get to hold him for the first time until the morning before he went in for his first surgery.
‘He’s so beautiful, you never would imagine there was anything wrong with him.
‘Every doctor, nurse and surgeon has poured so much love into looking after Charlie but now it’s out of our hands.
‘I hope by sharing Charlie’s story we don’t just find him a heart but that more people become organ donors.’
Anthony Clarkson, Assistant Director of Organ Donation for NHSBT, said: ‘Our thoughts are with Charlie and his family and we really hope he receives a transplant soon.
‘Sadly there is a shortage of donated organs and around three people die a day in need of a transplant.
‘Losing a child is a terrible tragedy but we know that many parents take comfort in being able to save lives through organ donation.
‘We urge everyone to please join the NHS Organ Donor Register and then tell your family you want to donate. A few words can make an extraordinary difference.’