A miracle baby who has already survived one heart transplant is likely to need two more in her lifetime because of a rare disease she was born with. One-year-old Ruby June Cotter, from Long Island, New York, was given a new heart for Christmas in December last year but is only the second of four life-giving organs doctors think she’ll need if she’s to live a long and happy life.
Ruby was given a new heart when she was just six-months-old after being born with a condition found in only 1% of all births, that left the organ weak and unable to supply enough blood to her body. But after surviving one life-threatening transplant and battling to regain her childhood, Ruby is expected to have to go through the trauma twice more as she grows up due to the short 20 year average lifespan of donor hearts.
Her dad, Brian, 36, a US air force worker, said: ‘To see your daughter go through something like this horrifying. Seeing her go in for the operation was the thing we feared the most as parents.
‘She is a extremely rare baby, only 0.4% of children are born with with the condition Ruby has and only a third of those end up needing a heart transplant. She has been so strong and has amazed us at how well she has done.
‘We knew she could have died on the operating table and it was terrifying. Me and my wife cried happy tears when we were told she was ok after ten hours or surgery.
‘We are still riding the high of Ruby recovering but we know she will need two more heart transplants when she grows up. Donor hearts last longer when they are from an adult rather than from a child and all donor hearts rarely last longer than 20 years.’
Ruby was born on June 12 last year following a seemingly normal pregnancy with mom, Ashley, 29. But unbeknown to her parents and maternity nurses, Ruby was suffering with heart problems all along.
But her life-threatening heart condition went undetected until she was three-months-old, in September last year, and Brian said he noticed her arms and legs were ‘stone cold’ and she had a low temperature. Concerned, Brian and Ashley brought her to Stony Brook University Hospital’s emergency room in New York, before Ruby was later transferred to the New York Presbyterian Hospital for specialist assessment.
The family of three went on to call this hospital home for the next three months after a series of tests led doctors to diagnose Ruby with dilated cardiomyopathy, a condition that causes a weakening of the heart and a reduced ability to pump blood. Some children born with the condition can life a normal and manage it with medication, but a small percentage of kids, like Ruby, need a new heart if they are to survive.
But even before receiving her new heart, Ruby underwent open heart surgery at three months old to have a state-of-the-art Berlin Heart surgically implanted, which is a device that assist the baby’s heart while she awaited a donor. After three months of waiting, Christmas came early for the Cotters when they received the news a donor heart had been found, and Ruby underwent life-changing surgery on December 22.
‘The three weeks before knowing Ruby needed a transplant were the worst for us because we had no idea if there would be a cure for her’, said Brian.
‘That was the most heart-breaking time of my life and to be honest, it was a relief to know she could have a transplant because that gave her a chance to get better.
‘We were told a donor had been found the night before the operation, I was watching Masterchef at the time actually. It was very emotional because we realized that another family had to go through so much trauma to save our baby.
‘We knew it was good for Ruby but we also knew the cost and what could go wrong for Ruby, but we stayed optimistic.’
The transplant was completed without any complications and just three weeks after the major operation, the family were allowed to go home together for the first time since September. Brian and pharmaceutical manufacturer, Ashley, gave up work and a stable income to stay with Ruby throughout her time in hospital and were supported financially by friends and family who donated money to help them with living expenses.
To date more than $100,000 has been raised and whilst Brian and Ashley have not needed all of it so far, Brian said a large bulk of the cash will be put to one side for when Ruby will inevitably need further transplants later in life.
He said: ‘The fundraising page took off within a matter of days, it makes me emotional just thinking about it because the whole community came together to support us and help us through it.
‘I still checked the page and people are still donating, but we know Ruby will probably need two more transplants so we’re putting all of the money aside for her.
‘It was amazing but terrifying at the same time to come home, we spent so long being surrounded by the best doctors and nurses and we were scared to not have them near us anymore.’
Ruby has made a full recovery from her heart transplant surgery and apart from needing to take regular medication and trips to the hospital for check ups, is able to live a normal life like any other toddler. To add to the family’s joy, Ruby is due to become a big sister later this year when Brian and Ashley welcome their second child into the world.
Brian added: ‘It is lovely to be able to finally enjoy being a family. We are living a very normal life now and Ruby is an easy going and happy baby.
‘We are living life to the full and family life is everything we dreamed of.’
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