Louis gets a new heart this Christmas
22 month old Louis is celebrating his first Christmas at home with his family in Wigan after receiving a new heart from a donor.
Louis was born prematurely at 32 weeks and spent some time in the Neonatal Intensive Care Unit in Wigan before being allowed home. At 8 weeks old he was rushed back to hospital as mum Jade noticed he was struggling to breath, having seizures and had mottled skin. After two days of not breathing properly he was put onto a ventilator and transferred from Wigan hospital, where the family live, to Alder Hey. Two days later, he was put onto ECMO, a machine that helps your heart and lungs function while you recover from serious illness or injury.
Several infections including meningitis and sepsis led to Myocarditis, an inflammation of the heart muscle. One third of children with myocarditis do not recover, and this was Louis’ case. He developed severely dilated cardiomyopathy, a disease of the heart muscle which makes the muscle walls become stretched and thin (dilated). The thinner walls are weakened and means the heart can’t squeeze properly to pump blood to the rest of the body.
Louis heart was too weak to work properly and he needed a heart transplant to sustain growth and development. Cardiologist at Alder Hey, Dr Phuoc Duong explained “Louis’ heart muscle was permanently damaged, and he needed to be in hospital to receive special intravenous medicine to help keep the heart pumping. A heart transplant was the only option to enable him to grow and go home with his family. “
Mum Jade said “It was a terrifying time seeing our tiny baby so unwel, but once we got to Alder Hey we felt instantly reassured and knew he was in the best place.”
In August, Jade and dad Keiran got the life-changing call they so desperately longed for. A heart had become available and they were flown by air ambulance to Great Ormond Street Hospital for the procedure.
Jade said “Once me and his dad Keiran had processed everything that was happening we were overcome with feelings we had never felt before, we were in a trance, probably even a state of shock. We were overwhelmed, scared and worried but also filled with gratitude that someone had chosen to donate their loved one’s organs and we will be forever grateful for that.”
Dr Duong continued “We are grateful for the transplant service from Great Ormond Street and Freeman Hospitals to support us to look after Louis. It was a tough 17 months wait, but he now deserves all the happiness and normality. I’ve known him since he was a small baby, and it is great to see a happy ending. We do our very best and this is the reason we go to work -to make kids better.”
The operation took 9 hours and Louis stayed in GOSH for two weeks before going home. Three months on and Louis is doing amazing and continues to make his family proud.
Mum Jade continued “The care and compassion we received by the staff at Alder Hey was impeccable, they made sure not only Louis, but me and his dad Keiran understood everything that was happening and always made sure our needs were met. They prepared us for the transplant and all loved Louis from the start and still do now. He was nicknamed King Louis as he was like the King of the ward after spending 17 months there.
Louis is now able to make memories to last a lifetime outside of hospital, he loves to play and make memories with his siblings, he especially loves dancing and playing with his footballs.
Mum Jade said “When Louis has a good day we will venture out the house and go for walks to feed the ducks and jump in muddy puddles. This year we will be celebrating our first Christmas at home as a family and to say I am looking forward to it is understatement. We can’t wait to make more memories and spend such precious time together. Without his new heart Louis may not have been with us. We will be forever grateful to the donor and their family and we will be thinking of them this Christmas.”
If you have been inspired by Louis’s story, confirm your decision to donate on the NHS Organ Donor Register. Go to – www.organdonation.nhs.uk/register-your-decision/