Hello my name is Aled and I live in Plymouth with my mum and dad.
I was born on the 1st September 2003 at Derriford hospital in Plymouth at 12:13 pm
I was born with a load of problems which come under the umbrella name of VACTERL or VATER association.
The problems I have are as follows:-
- Large ventricular septal defect (hole in the heart).
- Imperforate anus.
- Hypoplastic right kidney.
- Right radial aplasia and associated 3 digit hand (short right arm).
- Missing thumb on left hand.
- Anomalous sacral segmentation.
- Neuropathic bladder
- Right facial palsy.
- An extra rib.
- Mild Scoliosis.
- Abnormal Vertebrae
- Tethered spinal cord.
When my mum was pregnant with me she had no idea that I had all these problems. My mum even had gestational diabetes which meant that the hospital were carrying out extra ultrasound scans to make sure that I was okay, so you can imagine how shocked my mum and dad were when I was born.
I was born on a Monday by caesarean section weighing 2.162 Kg (4lb 12oz), I was in the breeched position and had the cord wrapped around my neck 7 times, so I was really lucky to be alive.
I had my first trip in an ambulance on Tuesday morning when I was transferred to Southampton general hospital so that they could look at my heart and (more importantly at the time) sort out the problem with my bowel by having a stoma formed to allow a colostomy bag to be fitted, and then at least I could start eating.
My Dad came with me to Southampton but my mum had to stay behind in Plymouth because there were no beds available for her. Up until then my mum and dad only knew about the problems with my bottom, heart and hands as further investigations where to take place.
On Tuesday afternoon I had another scan, this time on my kidneys, they found that I had one kidney that was Cystic which would possibly die off on its own and that the second was enlarged which hopefully would sort itself out in due time.
On Wednesday my dad was told that the only way for my mum to come and be with us would be for her to be discharged from hospital (2 days after a Caesarean). She was discharged and transferred to Southampton on Wednesday morning. I had the operation to form my stoma on the Wednesday afternoon and while I was in theatre my mum arrived at the hospital which (as you can imagine) was really emotional for both my mum and dad. The rest of that week was a nightmare for my mum and dad as they where given the full rundown of what problems I had.
Since I was born I was not fed real food until a day or two after my stoma operation, then when I was allowed food I was given 1ml of milk every couple of hours, then two ml and so on for about a week until they where sure that my bowel and stomach could cope with the food as well as the discharge from my stoma.
I stayed in Southampton general hospital and Princess Anne hospital (also in Southampton) for the next 6 weeks as my weight had dropped to 4lb 5oz (because of my stoma operation) and they wanted me to be a bit heavier. I was then discharged home for a couple of weeks to allow me to put on some more weight as they needed me to weigh 3 Kg for my heart operation.
The next 10 -14 days where really good for the three of us, it meant that we could have a little bit of normal life. The downside was that all the home visits would start, so we had a visit or two just about every day which was a nuisance at times but it meant that the support that we would need would at least be in place.
I returned to Southampton General on the 27 October 2003 ready for my operation on Tuesday 28 October. All the nurses made a big fuss of me when I came back and they couldn't believe how much I had changed in under two weeks.
My operation went well even though the hole in my heart was larger and more complicated than expected. They were hoping to take me off the ventilator first thing on the Wednesday as all had gone well during the operation and during the first part of Tuesday night, but things went wrong and my mum and dad were prepared for the worst (I don't know why they were worried because I was only having a good sleep). Eventually I came off the ventilator on Friday morning, and left the Intensive care unit to go back to Ocean ward to recover. From then on I did really well, so well in-fact that I was discharged home on Tuesday afternoon (7 days after the operation).
We got home from Southampton at 8:30 pm, at 11:00 pm my mum and dad received a phone call from Southampton saying that my blood results had shown an infection and that I was to be rushed to Derriford hospital for treatment. While I was being admitted into hospital I had to have blood taken again for tests, but because I had had a lot done lately there was no where for my blood to be taken from. So they decided to shave part of my hair away and placed a Venflon into the top of my head. This upset my mum and dad but it was probably the best place for it to go. I stayed in hospital for a couple of days but luckily they found that there was no infection and the results where probably due to the heart bypass machine which sometimes causes the blood to show an infection even if it doesn't have one.
We eventually got home on the Friday but had to go back in daily for antibiotics (just in case).Since getting home I have done really well, the weight keeps piling on which is really good news. I have plenty of people coming to see me to make sure I am okay, as well as having plenty of appointments to see all the specialists about my bottom, kidneys, spine and hands, and things like occupational therapy, physio therapy and Portage.
I was Christened on the 14 Dec 2003 so I now have 6 god parents. I then had a really nice Christmas, and, as you can imagine I was spoilt by everyone.