Alex Nathan Mitchell

When Alex was born we were over the moon and felt like we had won the lottery, having lost his
sister Ciara the year before (stillborn at 40 weeks). This is his abbreviated story.

At 5 months old Alex stopped breathing whilst out in the car with me. He was rushed to our local
hospital, transferred to Guy's, and then to Ormond Street where he was stabilised. Alex spent 9 days
in PICU where they ran various tests on him. He was gradually weaned off morphine and he was
transferred to the Peter Pan respiratory ward. After the high tech PICU, this ward looked ancient,
but the level of care for both Alex,and us as his parents was wonderful. The nurses were fantastic.
The Drs. told us that although Alex had survived this time, that without a tracheotomy, they
couldn't be sure it wouldn't happen again. They also wired him up to a computer overnight which
showed that his breathing rate slowed down dramatically, a couple of times a night,and although he
self corrected, without a trachy he might stop breathing while asleep. Thinking back to his sister,
we couldn't take any chances,and Brian and I had to get our heads round a tracheotomy and the level
of care required.

While we were at GOSH the Genetics Team came to look at Alex. Apparently they do this to
every child that comes in, so I was relatively unconcerned when they asked if they could take some
blood to run tests. A week later we were told thay wanted to see us. We were shown into a room with
4 doctors, a genetic's nurse, 2 of Alex's nurses and a Genetics Professor, who proceeded to tell us
in medical jargon,that Alex had an extremely rare version of Trisomy18 (Edwards Syndrome)a genetic
condition. They only knew of 6 other children in the world who had the same version as Alex. Of the
6 children, 5 died between 6-8 months,and only one lived until he was 13 months. He said Alex would
have a very poor quality of life and he would never walk or talk and he was completely negative
about his chances.They only thing they were certain about,was that he was going to die. In fact the
implication was - the sooner the better! As you can imagine, we were absolutely gobsmacked. We
thought we had been through the worst when Alex had stopped breathing.

After this devastating news we decided not to put Alex through the trauma of having a
tracheotomy and made plans to be transferred back to our local hospital, where we were going to be
trained in resuscitation,and to prepare ourselves for taking Alex home. We went on to have another
10 wonderful months with him, which we will always treasure.

Alex had a wonderful short life and brought joy to all who knew him. We went swimming with
a special needs swimming group and he was always happiest in the water,where he used to sing to
himself. He also learned to roll over and laugh and was almost able to sit up unaided. He progressed
onto solids at 8 months, when he decided he had enough of his naso-gastric tube, and he pulled it
out. As he was feeding so well, it never went back in. As parents of these special children, you
know what it's like, they progress at their own rate and have their own little milestones. I wish
that Professor at Ormond St. could have seen how well he did!

We flew home to Ireland, every other month, where Alex got to play with his cousins who
adored him. He celebrated his first birthday in our family summer house, which was lovely, as we
hung balloons from his sisters tree. We had a fabulous summer with him and all the professionals
were really pleased with his progress.

One night in October, Alex's apnoea alarm went off for the first time ever. Brian did
mouth to mouth on him, and heart massage,while I phoned for an ambulance. But looking at Alex, I
knew this time was different. He was white as a sheet, and I knew he was gone.The paramedic
continued heart massage all the way to the hospital.When we arrived Alex was whisked away to A&E and
we were shown into a waiting room. I was convinced Alex had died, and we phoned our families to tell
them. Then they told us they had intubated him,and he was on a ventilator. We had originally agreed
with his consultant, that if his heart stopped, we didn't want him revived, but they didn't have his
file in the emergency room. We told them we didn't want him kept alive on a machine, so they said
they'd remove the tube and he would either slip away, or would breath on his own. We decided Alex
could make his own decision,if he wanted to go.So they removed the tube and Alex continued to breath
on his own. We were moved into a private room on the children's ward to allow us some time with Alex
on our own, but he never re-gained conciousness. He opened his eyes a few times, but I don't think
he could see us.With hindsight I'm glad they revived him,as it gave us time to say our goodbyes. It
also gave my Mum time to fly over from Ireland to say goodbye and this was really important to her
and to Brians Mum.

Alex slipped away peacefully the following morning. Our little soldier had had enough.
Although we knew for 10 months we were going to lose him, it's still a massive shock when it
happens, and we were left totally devastated! There was a huge void in our lives without him. We
approached the nurses and asked if Alex could donate any of his organs, and we were pleased to
discover that he could donate his heart valves and his corneas. We took some comfort that he might
be able to help some children live a better life, and at least a part of him could live on.

Fortunately we took loads of photo's of Alex,as well as video footage of him and us
together and we get great comfort from watching them. It's great to be able to see him, and to hear
him babbling away to himself. At least we had 15 months of pure happiness, but we still miss him
every day.

We now have two other wonderful daughters aged 7&8, who fill our every waking moment and are a
joy to us. They know all about their other sister and brother and love hearing stories about them.

Sorry for going on so long. Not many people want to hear our story, but sadly, you have
lost loved ones too,and you know what it's like.

Thanks for listening.