Noah's Story (why I am riding the country)

Noah is my two and a half year old nephew. He was born with Tetralogy of Fallot, however it wasn't diagnosed until he was eight weeks old. When Noah was born he didn't put on weight, he didn't have a very good colour to his skin, he was very sweaty and breathless and he found it hard to sleep. When he went for his routine six week check with a G.P, she noticed that he had a heart murmur. Although she was not worried about the murmur she referred Noah to the pediatric outpatient department at St Richard's hospital, for a heart echo. It was dicovered that he had a moderate ventricular septum defect (a hole in his heart) and the pediatric consultant referred him to the pediatric cardiology ward at Southampton hospital, for further investigations, and to find out how severe the hole was and also if there were any other problems. At Southampton Noah underwent a heart echo, a chest x ray and an ECG. They found several problems with the heart, known as Tetralogy of Fallot. http://www.oceanward.co.uk/theHeart/CongenitalDefects/TetralogyOfFallot/ follow this link to the Southampton Ocean Ward site that explains the condition and has some really good diagrams.

We were told that he would need an operation in a couple of years to correct the problem, however his condition deteriated rapidly; he would cry inconsolably for long periods of time, where upon he would stop breathing briefly and his complexion would go slightly grey/ blue in colour. The consultants and surgeon wanted to leave the operation until Noah was stronger and weighed more, so that he would have the best possible chance of a rapid recovery, however he deteriated to a point that they decided to go ahead with the operation sooner than planned.

Noah had his operation at 15 weeks old, the operation took five hours to complete. The surgery was a success for the most part, except his Pulmonary valve wasn't functioning, so most of it had to be removed, resulting in leaving him with a risidual leak in his pulmonary valve. This means that he will need further surgery later on in life to replace the valve with an artifical one and thereafter to replace the artifical valves as they wear out.

I am doing this ride because of Noah and his experience and what my brother and sister-in-law went through. Initially I wanted to raise money for the British Heart Foundation, but after talking to Sean and Donna we had decided that we would also like to give somthing back to the smaller charites that directly helped Noah and his family.

Katrina

The following is a note from Donna, my sister-in-law and Noah's mummy:

Wessex Heartbeat-

http://www.heartbeat.co.uk/wessex-heartbeat-house

This fantastic charity, among other things are responsible for the wonder that is Heartbeat House. This is a house just across the road from the hospital where relatives are able to stay when they have somebody on the ward, and there is a part of the house specifically dedicated to the families on Ocean Ward called Ronald McDonald House. This was a haven for us as the hospital is a 100 mile round trip from home, (although many travel even further) and meant while I stayed up on the ward with Noah, Sean was able to stay nearby too, and we could have our daughter Faith with us so she still got to spend time with both of us and not be back home looked after by somebody and frightened not knowing what was happening to her brother. The facilities at the house are fantastic, you have your own room with shared bathrooms, a well equipped communal kitchen with your own cupboard and fridge space as well as communal lounge and garden. It provides a brief break from the intensity of the ward, and made an extremely stressful time easier to bear as we were all still able to be together. The house and all the running costs are entirely funded by the charity, and without fundraising and donations this wonderful house would not be able to remain open which is why when Katrina first mentioned the idea we were keen for some of the money to go here, as we are incredibly grateful for the house to have been there, and will no doubt need it again in the future.



Ocean Ward: -

http://www.oceanward.co.uk/index2011.html

This is the peadiatric cardiology ward at Southampton General hospital where Noah was officially diagnosed, had his operation, and is still treated when need be. The ward itself is amazing; they treat all children from birth right up until their later teenage years and cater for everybody. The whole ward is kept to an ocean theme, all the rooms and little wards have ocean themed names, the walls and floors are decorated to be like you are in the ocean and they have fish tanks too, which Noah has always loved to watch. There is a playroom with all sorts of toys and games and craft activities for all ages, run by two play specialists who are both lovely and friendly and welcoming. There are also dvds and portable dvd players available, which was fantastic for the last time we were there in June (just before Noah's second birthday) for a cardiac catheter and to balloon his valve to try and widen it again (which unfortunately was not successful). Trying to soothe a 2 year old who is not allowed to eat or drink in preparation for theatre, and doesnt understand why, only for that to be delayed and having to go even longer is not easy, thank god for this facility and Finding Nemo! There is also a kitchen for the families to make use of, a breastfeeding room with everything needed to pump and store breastmilk for the babies, without which I wouldnt have been able to keep up breastfeeding Noah while he was in for his first op and that was something very important to me as I wanted him to have the best chance possible. There is also a seperate area for teenagers where they have tv and games consoles and their own lounge so they can chill out away from the little ones. All of this costs a great deal to maintain, and then of course you have all of the medical equipment, and the many fantastic staff, who no matter how busy they are will always make time to talk to you if you are worried, and make sure you understand everything going on etc. It all adds up, but has meant so much to us so we would love to be able to give something back.

Donna

Families of Ocean Ward: -
Registered charity number 1145013



About our charity

We are a family to family support charity and we provide support for all families that have been or are treated on Ocean Ward, Southampton General Hospital. The donations received are used to provide coffee mornings, other events and providing hardship payments and equipment.


http://www.oceanward.co.uk/index2011.html

Britsh Heart Foundation
http://www.bhf.org.uk