Emma & Maddox Evans
As well as the heartwarming stories of hope to come out of the Wessex Cardiac Centre, inevitably there will also be the harrowing accounts of heartache in which families are left devastated by the loss of their loved one.
Nowhere is this more acutely felt perhaps than on Ocean Ward, the children's cardiac ward, where, despite advances in the diagnoses and treatment of congenital heart conditions, some babies and youngsters sadly fail to survive operations or withstand treatment.
Emma & Gareth Evans, from Ryde on the Isle of Wight have first-hand experience of what it is like to lose a longed-for baby. Their son, Maddox was born on August 25th, 2007 with Pulmonary Atresia with Intact Ventricular Septum (PAIVS), a rare condition which is said to occur in 4.5 per 100,000 live births in the United Kingdom and Ireland.
In his six-week battle for survival he endured open-heart surgery twice and won the hearts of all the nurses on E1.
Maddox Lionel Lee Evans died on October 11, 2007 - the 36th birthday of his Uncle Lee, Gareth's brother, who has Down's Syndrome, and after whom their baby was named.
What follows is part of Emma's story:
"It was my second pregnancy and it progressed quite normally until I went to St Mary's Hospital, Newport, for a scan at 20 weeks which detected that there was something wrong with one of his heart chambers.
I was referred to Southampton General Hospital where further tests revealed the extent of his problems. I was told that his heart hadn't developed correctly and there was a blockage between the right ventricle and the pulmonary artery, obstructing the flow of blood into the lungs.
I remember hearing a lot of "ifs", "buts" and "maybe nots". I was told that the probabilities were that he would need an operation when he was born and another when he was two, and another when he was five, and the possibility of a heart transplant.
They were being very honest and giving me the worst-case scenarios and tragically the very worst-case scenario happened.
On the journey home my mind was in turmoil about what to do and I recall thinking how I couldn't bear the prospect of giving birth to a dead baby. But I knew that I couldn't just give up on him - I had to give him that chance of life. If God was going to take him then so be it.
Then at 8 a.m. on the Saturday of the Bank Holiday Weekend my waters broke while I was at my mum's in East Cowes and Gareth was off attending the annual scooter rally - and wetting the baby's head before the birth!
I was in labour on the "Red-Jet" high speed service to Southampton while Gareth nursed the mother of all hangovers. Maddox was born at Southampton General Hospital at 5.15 p.m. and I was able to hold him for a few minutes before the E1 nurses came down for him.
He weighed 6lb10oz, had a shock of black spiky hair and he looked normal - and he had a good pair of lungs on him!
When he was four days old he had a BT shunt to increase the blood getting to the lungs. We were able to go home on September 5, and I managed to breastfeed him. Babies born with heart problems can sometimes experience difficulties with feeding, but the only downside for Maddox was that with hard sucking he got very tired quickly and it seemed that I was feeding him 24/7!
On September 23 we were back at Southampton for a cardiac catheterisation which took four hours and he was put on anticoagulant drugs.
At the beginning of October Maddox needed a further operation for a replacement pulmonary valve and we were told that the next 48 hours would be critical. Throughout it all I appreciated the doctors and nurses being honest with us - all the information we were receiving was straight down the line.
Within the space of 24 hours Maddox underwent open-heart surgery twice, and developed an infection.
Gareth had gone back over to the island to be with our elder son Morgan and it was while I was on my own that the machines in the intensive care unit started to go ballistic. Instinctively I knew that something was very wrong.
I turned around and saw them pumping his chest and then Maddox opened his eyes and looked at me - it was the first time that he had opened them.
I remember standing there counting how many people were standing round my son and how much money was being spent in trying to save his life. There were 18 people there in total.
The doctors worked on Maddox for 40 minutes and then I was informed by Dr Salmon that he had not made it. I just collapsed on the floor and went through so many different emotions.
Afterwards I didn't know what to do - I remember waking up the next morning initially thinking that I had imagined the events of the previous days. Morgan ran up to the empty Moses basket asking where his baby brother was. I said that he was the brightest star in the sky and we could look up every night and see him. He discovered a little star in his treasure chest and gave it to me saying that I could have Maddox with me all the time.
We were given a memory box with Maddox's footprints and handprints, a blanket, photographs and a lock of his hair. The nurses on Ocean Ward were brilliant and in a funny way I miss them because it was such a big part of my life - they felt like part of the family.
Staying at Heartbeat House was also a life-saver, especially when Morgan was able to come over the day before my birthday.
I am still receiving counselling and I would love another baby, but I am scared of it happening again, although I have had genetic testing and I know that Maddox's conditional was congenital, but not hereditary.
His funeral took place at the Isle of Wight Crematorium, Whippingham, and included the songs, "Beautiful Boy" by John Lennon and "I'll Stand By You", by Carrie Underwood.
Tons of people turned up and my aunt took several photos. When the photos were developed there were several "orbs" in some of the pictures around his little coffin and also my head. Now I'm quite a spiritual person and I'd like to think that this was spirit energy, the manifestation of a departed soul.
Every person needs a guardian angel and I believe that Maddox is mine. I believe that certain things happen for a reason. We are never going to forget him - he's always going to be in our hearts."
• Maddox's uncle, Robert Evans, a London fireman who lives on the Isle of Wight, ran the 2008 London Marathon in a time of 4 hours 18 minutes, raising £3,300 for Wessex Heartbeat in memory of Maddox.
• Emma paid tribute to Robert for his training and hard work and also wished to thank her family and the people of Ryde and Cowes for their support. She also wished to publicly thank the following: Island Waste Services of Newport; Stainless Games of Newport; her local Londis shop, The Painters Arms in Cowes, and Haylands Primary School, Ryde, where her son Morgan is a pupil.
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| Emma Evans with Maddox being cradled by Craig McLachlan, star of Chitty Chitty Bang Bang,who officially opened a special room for teenage heart patients at Southampton General Hospital, on Tuesday 4th September, 2007. | Emma Evans with son, Morgan Evans and Maddox's uncle, Robert Evans, present a cheque to D'Arcy Myers, CEO of Wessex Heartbeat on the Isle of Wight. The money was raised by Robert Evans running the marathon. |
