At the 20 week pregnancy scan, Kay and I faced every parents worse nightmare when the medical staff in our local hospital were concerned there may be something wrong with our baby's heart and arranged for us to be transferred to a specialist London Hospital for further investigation. The next day we were in the Evelina Childrens Hospital (part of St Thomas’s) for a specialist Echo heart scan on our baby. The scan took place in slience, with the consultant and medical staff highly focussed, and Kay and I trying to absorb or understand any comment or facial expression made. The scan was finished and we were taken into a side room to be told, by the consultant and counsellor of their concerns of our baby's heart development. We were handed some leaflets to read once we got home and asked to re-attend 6 weeks later to get a better assessment of the heart defect. The 6 week wait seemed to last for an eternity. The next scan allowed the specialist to gain a much better view of the heart condition our unborn baby had, and we were taken to another side room and told that our baby had a serious heart condition, with the left side of the heart extremely underdeveloped with diagnosis being Hyper Plastic Left Heart Syndrome. We went home in silence, hoping they had got it wrong and that our baby would prove them wrong. Another 6 weeks wait for the next appointment seemed to last a year, and we were back at the Evelina for a further scan and assessment. The consultant informed us again that the baby's heart was very undeveloped and that Kay would have to be induced at 38 weeks in St Thomas’s Hospital London. Due to the seriousness of the heart condition, we were told that our baby would have to be born in London to allow immediate specialist care to take place.
October 24 came and Kay and I travelled to St Thomas’s. We had a beautiful boy at just after 6pm, weighing in at a healthy 7lb 4oz. Arthur was perfect to look at, but was was taken straight away to NICU (with his Dad) for critical medical intervention to keep his heart functioning properly. At about 2230, Kay was able to get down to NICU and be with our son. We sat there for hours, taking in every movement knowing he would soon need a life saving operation. For three days we sat alongside little Arthur,knowing his Brothers and Sisters wanted to have him and his Mum and Dad home. We were then told that Arthur’s major surgery would be the next morning.
The day of his operation seemed to last forever, Arthur was moved from NICU to the Evelina for his operation which lasted best part 4 hours, his heart being stopped for over 30 minutes. Arthur’s operation was reported as a success, he was taken to PICU for recovery and close monitoring. The care he received was fantastic, they are truely wonderful people.
We received regular updates from the medical staff on his progress, he had a number of ECHO heart scans to monitor the repairs made. As Arthur improved, he was moved to the high dependency ward in preparation for his return home. Although we know his operation had gone well,he still has a number of issues with his heart that will need continual monitoring and support as he grows.
Our Family want to support the fantastic help and kindness provided to us during Arthur’s stay at the Evelina since he was diagnosed with congenital heart disease. We hope to raise sponsorship for the Echo Evelina by undertaking a number of charity events or fund raising during 2011.
Arthurs Brothers and Sisters will ask their friends and family to donate to this fantastic charity rather than receiving Birthday presents this year.
And to kick this off, Arthurs Dad has decided to take the plunge and start a diet from Valentines day, aiming to lose 60 pounds in weight.
Any support from Friends, Family and Work Colleagues would be much appreciated in supporting our nominated charity. More information can be found at http://www.echo-evelina.org.uk/
Update - 19th March... 5 weeks in and I have lost 20 pounds.....only 40 to go. Please keep supporting us.
14th May - 3 months in and I have now lost 42 pounds. We really do appreciate all the support shown.
End of August - Arthur is doing well, he is a wonderful lad who we are most proud of. It is fantastic that we have acheived the initial fund rasing target, we continue to fund raise and Arthurs Dad will soon hit his initial target, which will hopefully deliver some more donations. A really big thank you to those who have generously supported us, this really changes lives and contributes to a fantastic charity supporting children like our Arthur.
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May 2012 - Arthur continues to do well, he is a fantastic lad who makes his mum and dad so proud. Everyday is a special day with Arthur, he is growing stronger, loves getting out into the garden with his first shoes on and loves watching the dog. The Evelina is a superb hospital where great work goes totally unrecognised. They continue to look after Arthur and his medical needs to exceptional standards.
