This Summer I will do 5 Olympic Distance Triathlons in celebration of our daughter SARA LILY.

Born in October last year with a rare heart defect, at two days old she underwent open heart surgery at the world famous Great Ormond St Hospital. 7 months old now, we have the most gorgeous little girl, who has been such a superstar. She is an inspiration to us all, not least her parents!

Great Ormond St Hospital is world famous for all the right reasons. It is a place where miracles happen. By supporting GOSH, they will be able to continue their incredible work as well as maintain essential research into new techniques and approaches, so that if there is a solution, they will find it.

I will never be able to fully thank them for all they have done for Sara Lily, but I am happy to try. Can you help too? Anything you can give, however big or small, will be very much appreciated. THANKS.

Rob  x  x  x          

In October last year our beautiful Sara Lily came into the world. Sadly, she was born with a very rare heart defect, known as Transposition of the Great Arteries (TGA). Her Aorta and Pulmonary Arteries were connected the wrong way around and the only way to fix her was with open heart surgery. Oxygen rich blood from the lungs, was going back to the lungs, and the deoxygenated blood from the body was going back to the body. They were not swtiching over in the heart. The Aorta and Pulmonary Arteries needed to be literally severed and reattached in their opposite positions. Technically the most challenging part of this operation is to transpose the coronory arteries that branch from these vessels, as in a tiny baby, they are only a millimeter in diameter.

 

Until the operation takes place, enough blood can mix naturally through a small duct present between the ventricles in the heart. This is present in all newborns, although closes up naturally after birth. In our case if the hole became too small, Sara would need a small pre-operation to keep this hole large enough for the blood to mix, until the main operation could take place.

 

'Fortunately' Roni and I discovered this problem before Sara was born. Knowing what was to come, we were invited to Great Ormond St Hospital for a tour of the wards so we could see what to expect and wouldn't be overwhelmed. Walking up to the doors for the first time, it was a strange feeling. As we approached, I said to Roni 'Wow, this is the world famous GOSH... I NEVER thought I'd ever actually have to come here'. For me those first five minutes were a very sobering experience. It is an amazing place that does incredible things... but you can't help realise that anyone that is there - is there because there is a problem. There were a few babies and young children around... few showing any signs of being unwell. There were clowns in the reception area (like Patch Adams) and one came over to Roni and I. He started telling jokes... we couldn't help but laugh... but I wanted to cry too... it felt cruel to be torn between such emotions.

 

Not long later, Sara was born, on 31st October 2009 at UCLH. With Roni making her recovery, Sara, already fully connected to various medical equipment, was immediately transfered to Great Ormond St Hospital. She was taken in a special childrens transport unit in which I was able to join. It was one of the scariest experiences of my life. My first child, beeping machines, bumpy London roads and the streets full of Haloween Trick or Treaters. They had no idea!

 

Having known about this challenge before Sara was born, Roni and I somehow supported each other through it all. I think we did remarkably well. Initially we had been told that the operation would take place around a week after she was born, but she was doing well and everything was in place, so the team looking after her decided there was no need to wait. I was happy that the duct was a good size and there was no need for the extra operation. I was ushered into the consultation room and invited to sign the consent forms. It was an easy thing to do.

 

We quickly got Roni discharged from UCLH and she made it over to GOSH, where she finally got to hold Sara. It was an emotional time.

 

On a wet Monday morning, at just two days old, we said goodbye to our little treasure, as she was wheeled down the corridoor towards the operating theatre. It was a tense 6 hour wait, that Roni and I passed having breakfast in a nearby hotel. I remember the waiter telling us his wife was expecting too and we proudly showed him the photos we had taken so far.

 

After the nervous and little longer than expected wait, we got the phone call that the operation had gone without complication and that Sara was returning from theatre. 'Without complication' - somehow that is medical speak for 'It went well'. How can I describe the feeling of that moment? Joy and fear in equal measures.

 

Having succesfully passed the life saving operation, little did I know that the real challenge was yet to come. I had been so focussed on preparing for the birth and the operation, that I had never considered the post operation recovery. Even though I knew what to expect, the sight when she returned is one I will never forget. So may tubes and wires. What were they all for? We learnt so much so quickly and the sight of Sara in this condition was one that we soon became used to (see pictures).

 

Sara was connected to so much support and on so much medication, it was a very delicate and skilled job, to keep them all in balance. One went up, one went down. Ventilators, thermometers, catheters, drips, drains, ecgs, feeding tubes. Morphine, adrenaline, milrinone, diuretics, glucose, painkillers. We couldn't even pick up our own daughter.

 

But slowly slowly, Sara started to regain strength after the operation. Each day some medication was reduced, or another machine detached. The transformation miraculous - early signs of Sara's strong and determined character. A big milestone I remember, was when her ventilator was finally removed and she could at last breath for herself. What a relief.

 

All this while, Roni and I were very lucky to be able to stay in accommodation for parents at the hospital. Accommodation provided by the hospital, so that we were never more than a few minutes from Sara's side.

 

It is hard to believe even still, but just 8 days after the operation, we got to take Sara home - and the only thing she was attached to was Mum or Dad. I now understand what they mean when they say that Great Ormond St Hospital is a place where miracles happen.

 

Since bringing Sara home she is developing brilliantly. She is a very happy little girl, who is still too young to understand just how brave she has been. To meet her, you would never know what a bumpy start to life she has had. An inspiration - just gorgeous. She already has Dad wrapped around her little finger, and what a very proud and honoured Dad he is!!!

 

Thanks again for taking the time to visit my page and read about our story. Great Ormond Street really relies on the generosity of people like you to make it possible to help people like me. So please dig deep. Big or small, it will all help transform the lives of all the children that pass through their doors.

 

And don't forget, if you would like to come and cheer me on at one of the Triathlons that would be great too. They are:

 

Beaver Triathlon, Belvoir Castle, Nottingham, 30th May 2010

Windsor Triathlon, Windsor, 13th June 2010

Steelman Triathlon, Dorney Lake, 4th July 2010

Hyde Park Triathlon, London, 25th July 2010

London Triathlon, London Excel, 8th August 2010

 

T H A N K S     R O B  x  x  x

 

 

 

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