Hypoplastic Left Heart Syndrome (HLHS)sufferer Ameia Johnstone, 2, who also suffers from pulmonary arteries, leaking valves and coarctation of the aorta, underwent surgery on December 23 last year.
The Lockerbie toddler’s operation saw a coil placed in a collateral vein to drain blood away from her heart and lungs.
The coil has fibres which expands to cause a blood clot and the operation successfully blocked a vein, helping the toddler to cope with day-to-day activities easier.
Mum Emma was amazed by her daughter’s quick recovery as she had feared the tot would spend Christmas in hospital.
Emma said: “I honesty can not tell you how over the moon I was to have her home for Christmas. It was an amazing feeling waking up on Christmas morning at home with all three of the kids and one I’ll never forget.
“I was absolutely gobsmacked to have her home on the same day, genuinely never ever expected to be walking out of the hospital seven hours after she came back from surgery.
“ She went down at 9 am, came back up at 12.30 pm and was up and walking about by 4 pm and we left the hospital at 7.30 pm.”
So far the tot has undergone two open heart surgeries, one cardiac catheterisation, one keyhole surgery and has had a further three trips down to theatre to clear internal bleeding.
Discussing her daughter’s condition, Emma said: “When I was pregnant and found out about Ameia’s HLHS I felt terrified, sad, angry and worried for what would be her future and at the time I was advised to have a termination as it is the most rare and serious heart defect, and also the most difficult to treat.
“When I told them that I absolutely was not giving up on her, they said I could either let her die at birth or have her go through several open heart surgeries for her to survive, and was also told that even with the surgeries she still only has a 50 per cent chance of surviving until she is five.”
Mum-of-three Emma explained that Ameia’s condition has affected her in many ways but the biggest draw back is how easily she exhausts herself.
Emma said: “She often gets very breathless and turns blue, her blood oxygen levels are permanently lower than normal.
“She also has a very low immune system, and when she does catch bugs, which is often, she tends to be hit harder with them than that of someone without a heart defect.”
The mum is also on a round-the-clock mission to keep her daughter’s temperature under control, if she gets too cold her oxygen levels drop and if she gets too hot her heart rhythm goes into overdrive and beats too fast.
The tot is also on a high calorie diet with specially prescribed milk and burns off calories very fast meaning the two-and-a-half year old has not grown much in the past year, still wearing clothes for 12-18-months.
Despite Ameia’s condition Emma says she is a very happy and bright child who loves life and her family.
Emma said: “I am proud of all three of my kids for coping remarkably well with all that’s been thrown at them and still coming out smiling every time.
“And I can never thank the Yorkhill staff enough for all they’ve done for Ameia so far, and will continue to do as her surgeries aren’t over yet.
“She’s still to get another cardiac catheterisation, her pulmonary arteries widened and a hopefully final open heart surgery, and providing there are no problems after the last surgery then she shouldn’t need a heart transplant.”
