Una G & Eloise Neville
When their baby was born with a serious heart disorder, first-time parents Eloise and Greg Neville were given the most poignant insight into the Wessex Cardiac Centre (WCC).
They received the inside story about Ocean Ward from their close family friend, Ellaline Grace Vincent, a 15-year-old aspiring dancer, singer and actress who had courageously battled a rare cancer of the heart and received treatment there in 2006. Tragically, as she appeared to be making a good recovery, the Poole teenager was found to have an inoperable brain tumour and she died in August 2007.
But it was not just the middle name of Grace which Una and Ellaline shared. A series of surreal coincidences began to emerge - they had been treated in exactly the same beds on Paediatric Intensive Care Unit (PICU) and Ocean Ward, had been in the care of the same surgeon, Mr Marcus Haw. Their surgery was performed on the same date, a year apart and on both occasions, Mr Haw had cancelled others to meet their urgent priority. Ellaline had been inspirational to Eloise and she, in turn, hopes that the story of Una Grace can encourage parents who have babies with heart problems.
Eloise works in tourism and her husband Greg, is a docker, and they live on Poole Quay. In July 2008 they celebrated the first anniversary of their daughter's life-saving surgery with a special fundraising garden party in aid of Wessex Heartbeat.
What follows is part of their story as related by Eloise:
"When I was pregnant I had my 20-week scan at Poole General Hospital and a possible hole-in-the-heart was detected. But then I was advised that it would probably close up and not to worry about it.
Una Grace was born on April 30, 2007 and was diagnosed with Atrioventricular Septal Defect (AVSD) and double outlet right ventricular (DORV) potential for Subaortic Stenosis.
She was transferred in an ambulance to the Wessex Cardiac Centre and we were told that she would need surgery to survive.
Her cardiologist was hoping that she could hold her own until she was six months old when she would be bigger and stronger to withstand the surgery. But by the time Una was eight weeks old she was listless and breathing rapidly, in a panting fashion. She couldn't eat or drink and was a very poorly baby.
We were told by Mr Haw that unless surgery was performed within two weeks she would be unlikely to survive.
She had open-heart surgery on July 3, 2007 and thankfully survived the operation.
The advice we were given - the videos, the books, the support was outstanding. We were first-time parents so having a baby was scary - let alone one so precious as Una Grace!
We stayed for two weeks at Heartbeat House and it was amazing. We were not familiar with Southampton and had thought that we would have to travel backwards and forwards from Poole, limiting the time spent with Una. Those two weeks being able to check on Una at any time of the day or night helped so much. It was so daunting having to cope with a seriously ill baby.
Una spent a week in PICU with complications, as her heart rate was irregular after the operation and she had an external pacemaker fitted and then had chest and lung drains attached. (In all we remember counting 14 wires attached!!) We sat round her bed and never felt in the way or useless as the staff made us part of their family and took time to explain all the machines and what was happening. Then finally Una perked up and was allowed back to Ocean Ward - a celebration day for us, so we bought chocolates for all the nurses.
On Ocean Ward again there was more love and support. We were able to pick up Una and we spent many hours gazing at the pretty colours and images on the walls and floor. The way Ocean Ward is designed makes you feel calm and protected and the art work provided something for the little babies to focus on. Una loved the giant fish tank! Ellaine was delighted to visit Una and was very happy to return to Ocean ward, without dread or worry. She knew it to be a very special place.
We met many other beautiful babies on Ocean Ward and their parents, and we were able to counsel each other. The entire experience made Greg and I realise that we were so lucky to be living here and to get our daughter loved and treated so well by Southampton PICU and Ocean Ward. We can never forget, and don't want to. We really feel indebted to the Wessex Cardiac Centre.
Una Grace is now living life to her fullest. She chases birds in the park; she has swimming lessons once a week; she tires out the grandparents and she never stops smiling. None of the memories we have gathered in the past 18 months would have been possible without Wessex Heartbeat.
Every day people ask me "How do you cope?" and I reply that if you had a team of people like we do, anyone can manage.
It is very likely that Una will need further surgery in the future, especially around the time of puberty, when a strain could be placed on her heart. But we are fine with that and know there is no need to be scared as we have so much support, and Una has developed a magical fighting spirit.
We have now been told that Una needs only annual check-ups. That was such great news that we went home to celebrate - and now we're expecting our second child!
We believe that it is so important for parents to know how, from a very sick baby, there is now this crazy little lunatic running us ragged!"
