Thank you so much for the wonderful quilt we received whilst we were in hospital with Gabriela having her transplant.
It is absolutely wonderful & we were delighted with it. I have sent 2 photos - one of them was taken on Tuesday morning whilst Gabriela still in hospital, the other one was yesterday when we got home.
it felt amazing yesterday that less than 3 weeks post transplant, Gabriela was discharged from hospital - so we are now attempting to rediscover something of a 'normal' life with Gabriela.
The quilt is beautiful - you will see from the photos that Gabriela loves it too.
Once again, thank you so much.
Angela (Gabriela's mum)
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 & severe condition & we were told that if Gabriela was to survive at all she would need open heart surgery in her first week of life, & two more stages later down the line. We knew life was never going to be the same again. Following a traumatic birth & an emergency caesarean due to baby heart rate problems, Gabriela was kept stable,although critical at Leeds general Infirmary for her first 5 days before she made the difficult journet to Birmingham Children's Hospital, where at 7 days old she underwent an 8 hour open heart surgery. Gabriela spent almost one week in intensive care finally making it back to the ward for a couple of weeks before she was strong enough to be transferred back to Leeds hospital, & finally home at 6 weeks.
We enjoyed a couple of months at home with Gabriela where she seemed to be going from strength to strength. In June we booked into Birmingham Children's Hospital for routine tests to see how Gabriela was doing since surgery, and also to try & 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 Gabriela wasn't as well as she had been - she had begun sweating when feeding & was definitely sleeping more than usual. The appointment with Birmingham could not have been better timed, as after they examined her, we were told she had already gone into significant heart failure, & at the age of only 3 & half months, she would need stage 2 surgery as an emergency - she was not expected to live another week.
Gabriela's recovery this time was very slow & 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 Gabriela 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 Gabriela was struggling to cope with her very poor heart function. Weekly echoes showed no improvement & eventually in September our consultant in Leeds suggested it was perhaps time to consult the paediatric transplant centre as her heart would not be strong enough to cope with third stage open heart surgery.
Terrified at the possible outcome we went to Freemans 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 she 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 her older brother & sister when the phonecall came from the transplant coordinator to say a transplant was not possible as Gabriela had an unheard of - very high - number of antibodies which meant she would only be able to accept 2 or 3 hearts out of 100. This obviously meant a transplant was no longer an option, unless we were willing to put Gabriela 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, Gabriela loved every minute of it, and it gave us memories we will treasure forever, especially given we never thought she would make it that far! The treatment started as soon as Gabriela had been to theatre to have her Hickman line inserted & she was also placed on the transplant list. We had 4 tough weeks of treatment, Gabriela didn't react well at first, but as ever, our star shone through it all & coped really well. We found out in mid - Feb that the treatment had been more successful than expected with Gabriels now able to take 50% of hearts. The treatment means that Gabriela is completely immune supressed, so to combat the possibility of suffering lots of infections, we now travel to the Freeman for one day every week where Gabriela is infused with 'good' antibiotics to protect her against everyday colds & infections.
At the beginning of March, Gabriela's status on the transplant list was upped to urgent.
Written by Gabriela's mum
At the beginning of July 2009, Gabriela was admitted to hospital for her transplant. An Emergency quilt was made for her and delivered by a family member to her in hospital where she is recovering well from the transplant.