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Gabriela Filarowski (known as Gabrysia to her family) received a life-saving heart transplant in 2009 when she was 16 months old. Her mother Angela tells their story.
We found out when I was 20 weeks pregnant at a routine scan that our baby daughter was to be born with congenital heart disease and were told that if Gabrysia was to survive she would need open heart surgery in her first week of life, and two more surgeries later down the line. We knew life was never going to be the same again. Following a traumatic birth in March 2008 Gabrysia was kept stable, although critical for her first five days until at seven days old she underwent an 8 hour open heart surgery.
We enjoyed a couple of months at home with Gabrysia where she seemed to be going from strength to strength until in June 2008 routine tests showed that Gabrysia, had already gone into significant heart failure, and at the age of only three-and-a-half months, she would need her stage two surgery as an emergency — she was not expected to live another week.
Gabrysia’s recovery this time was very slow and much more traumatic than the first, but eventually the day came when we were told we could return home, although Gabrysia was still very poorly. Her heart function was described as ‘significantly impaired’, but consultants at the hospital hoped she just needed more time to recover from the awful surgery she had just been through.
The Summer of 2008 was very difficult. Gabrysia was struggling to cope with her very poor heart function and our consultant suggested it was perhaps time to consult the paediatric transplant centre at Newcastle’s Freeman Hospital. Terrified at the possible outcome we travelled to the Freeman Hospital at the end of October 2008 to be assessed for heart transplantation. After rigorous tests were carried out, we were told that Gabrysia was a suitable candidate for a heart transplant — that in fact a transplant was her only option — and Gabrysia wasn’t expected to live another 12 months.
We had a wonderful Christmas at home. Gabrysia loved every minute of it, and it gave us memories we will treasure forever, especially given we never thought she was going to make it that far! At the beginning of March, Gabrysia’s status on the transplant list was upped to ‘urgent’ as our consultants just did not know how much longer Gabrysia could continue to cope with a heart which was so significantly impaired.
Our bags were packed waiting for ‘the call’ as we tried as best we could to live every day to the full, knowing it could well be our last, but being as positive as we could. In the weeks which led up to the night we received ‘our call’ Gabrysia was showing sure signs of deterioration; not only was her heart extremely weak, but other parts of her body were beginning to fail.
The evening of Thursday 9 July 2009 — 7pm and the phone call which was to change everything. We had a potential donor and had to get to hospital as quickly as possible. Gabrysia went into theatre at 1am on Friday 10th July for an eight-hour operation. Andrew and I were overwhelmed with fear as we said goodbye to Gabrysia, but had a huge sense that this was it — the night that would save Gabrysia — a great night for a miracle! Nothing can describe the range of emotions followed by extreme joy to learn that her new heart was working and that she would soon be out of theatre.
Gabrysia arrived on the Paediatric Intensive Care Unit just after 9am, although it was several hours before we could see her. She was obviously looking very poorly, and wired up to lots of machines, receiving lots of drugs, but our little girl had come through the first stage and we were on the road to recovery.
From that point onwards Gabrysia did so well, going from strength to strength every day. She spent eight days in intensive care before being transferred to the Ward, then a further 11 days before we were discharged home – not even three weeks post heart transplant. We were amazed!
Gabrysia is now doing really well, but as with all transplant journeys there have been bumps along the way. Now, Gabrysia is the best she has ever been, we celebrated her second birthday at the beginning of March and she loved every second of it — we lost count of the number of times we had to relight her birthday cake candles and sing ‘Happy Birthday’ again and we need to build an extension for the huge number of wonderful gifts she received! We now only go to the Freeman hospital for check-ups every four weeks.
We were told a couple of weeks ago that Gabrysia's immune system is gaining strength; the news came rather unexpectedly and we were all overwhelmed. And what a huge difference it has made to family life — we feel we are getting back on the path to normality. We have enjoyed some lovely days out together ... she just loves feeding the ducks and going on the swings in the park! We now look forward to celebrating her first transplant anniversary which will be on 10 July 2010. We have organised a charity dinner dance at a local hotel in Leeds with all proceeds going to the Children’s Cardiac Transplant Trust based at Newcastle’s Freeman Hospital. The Freeman Hospital has just about become our second home! We could never thank the wonderful staff enough. Every single person we have come into contact with has been a constant source of strength and support.
Of course it would be impossible to write this without talking about our donor family who we owe an eternal debt of gratitude to — a very brave family, who felt strong enough to look beyond their own loss to help others. Andrew and I talked at length between ourselves and to others about the awful decision another family would have to make in order to give our daughter the heart she so desperately needed, and indeed have pleaded for people to consider putting their names onto the organ donor register. We always hoped that even if it was too late for Gabrysia that it could make a difference, and save the lives of other children, and adults. We hope and pray that other families can follow the courageous example of our donor family so that, if the worst happens, some good can come from tragedy. Now our daughter Gabrysia has the chance of a long life thanks to a most courageous decision.a
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