Here we are having started 2023 so Happy New Year to all.
As we move in to a New Year I have again decided to try and raise some much needed funds for Rockinghorse, for those who may not have followed me and heard about my story please indulge me while I recap.
2nd September 1994 is a date that will always be remembered for so many reasons, Amanda and I welcomed our first son into the world , yes Eddie made his appearance.
Eddie was a healthy weight 7lb 12oz but had quite a major complication, fortunately for us Amanda's waters had broken quite a number of hours before Eddie was born which meant that that the medical team had to run some extra tests, these included passing a naso-gastric tube to test the contents of his stomach. Whilst trying to pass this tube they found that they could not get it to his stomach, an X-ray confirmed that the tube was doubling back on itself in his Oesophagus to confirm that he had a condition called Tracheo-Oesopageal Fistula (TOF) where the lower part of the oesophagus had attached to the Trachea and Oesophageal atresia where the top part of the oesophagus just leads to a pouch.
This required immediate surgery as obviously he could not feed, a place was found at the Royal Alex Children's Hospital in Brighton but the Drs were trying to get him a space in Great Ormond Street. At this point I dashed home to get some clothes and bits as we were obviously going to be transferred from the Princess Royal in Haywards Heath. When I returned I was told that Amanda and Eddie were just getting into the Ambulance to go to Brighton, this did pose an issue for the team as at 7lb 12 Eddie was quite a large baby for the incubator that he needed to travel in to keep him warm and safebut they did manage to shoe horn him in! At this point I was concerned, as why would they be trying to get us to GOSH if we already had a place at the Alex, my thoughts were that GOSH must be considered a better option hence my concern.
As it turned out we could not have been better looked after by the team at the Alex and supported by the Rockinghorse charity. One issue was that being a Children's hospital they were not equipped to have Amanda in, this is where the charity first stepped in, they helped us find a room in a house for parents of sick children at the hospital so we could be close and not constantly worried about the travel and time it may take us to get to Eddie should we need to.
At 9 hours old Eddie was already having a major operation to disconnect the lower section of his oesophagus from his trachea and connect it to the top section, at this point he was a very poorly baby and in intensive care covered in wires and tubes, which meant we didn't really see his face for many weeks.
Over the next few months he had to have many more operations to stretch the join as the scar tissue constricted, on one of these stretches the procedure didn't go fully as planned and a whole was made into his chest cavity from his oesophagus, when his surgeon came out to tell us he looked broken and obviously felt bad that Eddie was now back in intensive care and in a very bad way. He even asked us if we wanted to transfer to GOSH as they had "caused the issue" at Brighton. I have put that in "" as I want to confirm that at no time did we feel this way, it was a risk of the operation and could just have easily happened at GOSH as at the Alex. We decided that we would stay at Brighton, we could not fault the care that Eddie had been given or the way that we as his parents had been supported.
Eddie finally came home after about 7 months although he was back in regularly, he still had a gastric feeding tube until his first birthday when something happened to it and we had a couple of trips to the hospital before finally actually removing it as it would not work correctly.
Eddie was still under the care of the Alex even when it moved from the Old building in Dyke road, that we first visited, to the new building at the County until he was 19 and apparently became an adult. We are still waiting for him to grow up though, not sure that will ever happen!
Over the years we have completed a variety of challenges as fundraising efforts for Rockinghorse which is our way to in some small way say thankyou to the amazing teams at the Hospital and the charity for the support and care that they provided us as a family for many years, this year I have taken on April as a challenge month, which has just recently been extended into May.
April 02 Brighton Marathon
April 08 South Downs Way 50 Mile Ultra
April 23 London Marathon
Then the new one May 5 - 13 The North Coast 500, a 500 mile cycle ride around the coast of Scotland which includes ascent of about 2,000 meters more that the height of Everest over 7 days!
I have a fundraising page at www.justgiving.com/rockinghorse1 if anyone could spare any change, every £1 really will help and assist me in saying thankyou to the Hospital and Rockinghorse and in turn allow them to continue to provide the same amazing support that we were fortunate enough to experience.
Thank you for reading.
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