Gabriela Filarowski • Life Stories • LLTGL

Gabriela Filarowski (known as Gabrysia to her family) is just 13 months old and currently on the urgent list for a heart transplant. 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. She was diagnosed with a very rare and severe condition and we were told that if Gabrysia was to survive at all she would need open heart surgery in her first week of life, and two more stages later down the line. We knew life was never going to be the same again. Following a traumatic birth and an emergency caesarean due to baby heart rate problems, Gabrysia was kept stable, although critical at Leeds General Infirmary for her first 5 days before she made a difficult journey to Birmingham Children’s Hospital, where at 7 days old she underwent an 8 hour Open Heart Surgery. Gabrysia spent almost one week in intensive care finally making it back onto the ward for a couple of weeks before she was strong enough to be transferred back to Leeds hospital, and finally home at 6 weeks old.

We enjoyed a couple of months at home with Gabrysia where she seemed to be going from strength to strength. In June we were booked into Birmingham Children’s Hospital for routine tests to see how Gabrysia was doing since her surgery, and also to try and estimate when she would be ready for her stage 2 open heart surgery. For a couple of days before our admission to hospital we noticed Gabrysia wasn’t as well as she had been – she had begun sweating when feeding and was definitely sleeping more than usual. The appointment with Birmingham could not have been better timed, as after they examined Gabrysia, we were told she had already gone into significant heart failure, and at the age of only 3 and a half months, she would need her stage 2 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. We were called out in the middle of the night several times fearing the worst but somehow 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 put through.

The Summer of 2008 was very difficult and Gabrysia was struggling to cope with her very poor heart function. Weekly echos showed no improvement and eventually in September our consultant in Leeds suggested it was perhaps time to consult the paediatric transplant centre as Gabrysia’s heart would not be strong enough to cope with the planned third stage open heart surgery.

Terrified at the possible outcome we went to the Freeman Hospital in Newcastle 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 – but that she would not be put on the list until all blood test results were back. The results came through on bonfire night – we had just enjoyed fireworks in the back garden with Gabrysia’s older brother Thomas (12) and sister Ania (10) when the phonecall came from the transplant coordinator to say a transplant was not possible as Gabrysia had an unheard of – very high – number of antibodies which meant she would only be able to accept 2 or 3 hearts out of every 100. This obviously meant a transplant was no longer an option, unless we were willing to put Gabrysia through some groundbreaking treatment – never before carried out on a baby with significantly poor heart function. As always, we were willing to try anything which would mean our little girl could live.

So, we were admitted to the Freeman Hospital at the beginning of January 2009. We had a wonderful Christmas at home, Gabrysia loved every minute of it, and it gave us memories we will treasure for ever, especially given we never thought she was going to make it that far! The treatment started as soon as Gabrysia had been to theatre to have her Hickman line inserted and Gabrysia was also placed on the transplant list. We had four tough weeks of treatment, Gabrysia didn’t react well at first, but as ever, our star shone through it all and coped really well. We found out mid-Feb that the treatment had been more successful than expected with Gabrysia now being able to take 50% of hearts. The treatment means that Gabrysia is completely immune suppressed, so to combat the possibility of suffering lots of infections, we now travel to the Freeman for one day every week where Gabrysia is infused with ‘good’ antibodies to protect her against everyday colds and infections.

At the beginning of March, Gabrysia’s status on the transplant list was upped to ‘urgent’ as our consultants just do not know how much longer Gabrysia can continue to cope with a heart which is so significantly impaired.

So now, our bags are packed and we try as best we can to live every day to the full, knowing it could well be our last, but being as positive as we can that we will get a donor heart very soon. It only takes a second to save a life, and we are pleading with families to consider signing up to the organ donor register.