Our Pal - Aled

Story written 2005

Aled was born on the 1st Sept 2003 after 38 weeks of his mum having to control Gestational diabetes. His mum was regularly scanned to check Aled’s progress and after 8 months a date was set for Aleds birth due to his size and because he was in the breach position.

When he was born the only thing that we noticed was that his arm was looking strange. After a couple of hours a Consultant came and explained to us that Aled had VACTERL Association which meant he could have loads of problems. Some of the immediate problems were an Imperforate anus, a large hole in the heart with possible coarctation of the artery from the heart, a missing Radius, 3 fingers on one hand and a free floating thumb on the other hand.

After 18 hours he was transferred from Plymouth to Southampton because of the heart problems. After 48 hours he had an operation to fit a colostomy bag due to his imperforate anus. That same day we found that one of his kidneys was not formed properly and would probably shrivel up and die on its own. He stayed at Southampton for the next 8 weeks while they fattened him up for his heart operation. They repaired his heart in Nov 2003, all went well with the operation but while he was In PICU is heart was failing to recover and slowly we watched as we thought he was slipping away from us. We decided to let our families know that things weren’t too good so we left PICU to make a few phone calls. While we were out of PICU his heart sprang into life and that was the start of a really quick recovery.

Since then Aled has had two operations on his bowel and anus, an operation on his left hand to move his index finger to the thumb position. He also had an operation to release a tethered spinal cord and is now awaiting an operation on his right hand to split the webbed fingers. We have also found out that Aled has Scoliosis and abnormal vertebrae which will also need watching for damage.

No matter what Aled goes through he is still a “proper” boy, into all sorts of trouble. He loves meeting people and enjoys going shopping just to see other people in the shops.

Update 21st September 2012

Since Aled joined Post Pals in 2005 he has really had some great post from you. Post Pals was there throughout a lot of Aled’s surgeries and each of his recoveries, during which time he received letters from all around the world. Please be in no doubt that you as a group made a significant difference in how Aled recovered after his surgeries and for that Gaile and I will always be thankful.

Once again, many thanks for the support you have given, it really has been priceless.

Update 8th April 2012

Aled is doing well with his ACE and Mitrofanoff that he had in July. He still gets affected by infections, but luckily these appear to be less intense.

Aled has been granted a wish by The Starlight Foundation so he is going to New York in a couple of weeks to meet Jake T Austin (Max Rouso) from Wizards of Waverley Place. As you can imagine he is really excited!

Update 27th August 2011

Aled has finally come home! It turns out that he had a nasty infection in both his bladder and his kidney. He has been sorted with antibiotics and has another two weeks of them before swapping to long term antibiotics.

Update 20th August 2011

Aled was admitted to Bristol children’s hospital on the 2nd July for a bladder augmentation. At the same time he was to have the ACE and Mitrofanof formed. It was a big operation with Aled being in theatre for just over ten hours.

Initially all was well until a week after the operation when fluids were introduced to his diet. Sadly this proved too much and Aled was in excruciating agony. In the end they did emergency surgery on Thursday 14th July. This was another 6 hour operation. When we saw the surgeon he said that Aled suffered from serious adhesions which have stopped his stomach from working correctly.

At the moment he remains in hospital with no real chance of coming home just yet. Otherwise he is good though. He is taking it all in his stride and making his mum and dad proud by being as strong as he is.

Thank you to all that have sent cards, gifts etc. They are really appreciated. Thanks also for the box of goodies that was sent to Gaile, this was a lovely surprise.

Update 4th May 2011

Things have been relatively quiet for Aled, he’s had a few hospital appointments but these have just been the routine check-ups.

We are going to Orlando and then up to Washington DC to take part in some research that is being carried out for Aled’s condition.

When we arrive back home we are home for a couple of days, then Aled is being admitted into hospital on the 2nd July for the operation that he should have had in November.

Aled would like to say thank you very much for the cards and gifts that he receives.

Update 1st February 2011

Since we last updated Aled’s page he has had a good Christmas even though he managed to break his arm the week before. So for the second time in 5 years he has spent Christmas with a red cast on his arm.

On New Years Eve he was lucky enough to go to the theatre to watch sleeping beauty. He was even luckier to be invited on stage to take part in a small section with Joe Pasquale. Aled had a really big buzz from this and has now started drama classes and even auditioned for a part in a play during his first session at the drama club.

Yet again though he has been poorly with a chest infection, luckily he is getting over it and is now back in school.

A big thank you to Louise Siddle for Aled’s Christmas parcel, he was over the moon with it.

Update 29th November 2010

Since Aled returned home from hospital he has made slow progress in improving his health. He is back at school but seems to be catching all the chest bugs that are currently around.

He has really enjoyed receiving the postcards and seems to get more decent post than his parents get junk mail.

Update 2nd November 2010

Aled’s operation was cancelled on Monday morning due to Aled having pneumonia. He was put on IV antibiotics and is now on oral antibiotics. We now have a new date in July.

Aled loves having post again and wants to thank everyone for their support.

Aled has rejoined Post Pals.

Update 17th October 2010

Aled has had a relatively quiet 22 months, apart from the follow up hospital appointments. He is now in year 2 of school which he loves and is thriving being at school. He has also started Beavers and he really enjoys going there and even went on a overnight camp with them in July which he thoroughly enjoyed.

He is due to go into Bristol Children’s Hospital on the 30th October and have a surgery on the 1st November. This operation is on his bowels and bladder. He is having a bladder augmentation, a Mitrofanoff and an ACE. We are expecting to be in hospital for 2-3 weeks, and after the operation he will not be allowed to go back to school until at least January. So, as you can imagine, this is a massive operation.

Update 3rd January 2009

Aled had an MRI during December to try and discover why he suffers with pains in his legs; hopefully we will get the results soon.

He was really excited about Christmas this year; he received a video email from Santa, as well as a letter from one of Santa’s fairies which he really enjoyed, as it was left by his bed while he was sleeping.

A special thank you to Aled’s reindeer and Elves who really made a big effort and was really appreciated by Aled.

Also, a special thank you to Julie Barrett and Karen Reece-Mae, who have continued their support.

Update 15th November 2008

Aled had tests on his bladder recently, the results of which we have only just received. It turns out that his bladder is only about half the size of a normal bladder. The bladder neck is thickened and he has spasms when it gets full which causes him to have accidents. He was already on the highest dose possible of his medication, but now it has been increased by 50% which has already caused trouble as the GP won’t prescribe it until she has spoken to the consultant. So we wait to see how the medication will help with the spasms.

Sometime in the near future Aled is going to have a bladder reconstruction and at the same time have an ACE made to help with bowel issues. The down side is that he will have to self catheterize after the op, but on the flip side he will get two operations for the price of one, as the ACE was already expected anyway, so at least he will only have one surgery.

The preparations for Christmas have started, Aled’s list is huge and he is already counting down his sleeps until the big day.

Update 6th September 2008

Aled saw his Plastic surgeon last week to see how his hands are doing after his operation, as well as to check on a problem Aled has with his arm. The surgeon is happy with Aled’s hands but has said that Aled also has an improperly formed elbow on his left arm which means that he cannot rotate his arm enough to do certain things like accepting change from people. This was a bit of a shock to us as parents, as we thought that it was just muscular and needed a bit of stretching… never mind it could have been worse.

On a good note Aled started school 2 days after his 5th birthday, he was really excited about going and so far has really enjoyed himself. Many thanks to everyone that sent a birthday card, he had a major smile when he found out that he had 44 birthday cards. Thanks to everyone that sent a gift too, you are all very generous and thoughtful.

Aled is in hospital on 15th September for a Supa pubic catheter to be fitted before they do bladder tests on the 16th. The outcomes of these tests decide whether he will have a bladder reconstruction or not.
Post Pals is an exceptional website that brings Aled a lot of smiles. He is the first to check through the post when it arrives to make sure that he has his cards/letters first. The generosity of all the people that send cards etc. is incredible, and I thank Post Pals for making Aled so happy with his post.

Update 8th June 2008

Aled has had a quiet time over the last couple of months; his hand has healed well after his last surgery, and he visited Disneyland Paris (again) which he really, really enjoyed. The trouble is that he now wants to go there all the time… if only.

Last month Aled saw his urologist as he has had a lot of problems with his bladder and finding a cause has been a nightmare. It now looks like they have one – some sort of growth on the bladder. This means that he has to have video urodynamics done to check this out and then depending on the results a possible bladder reconstruction. This has been a bit of a shock as we were sort of hoping that his operations were over with, but maybe not…

Preparations are also well under way to getting Aled to school in September. He is really excited about it but mum and dad are anxious about the outcome.

Update 5th March 2008

Thank you everyone that sent Aled a card or gift over the Christmas period, he had a great time with lots of presents and cards. A big special thank you to Aled’s elves and reindeers who made the build up to Christmas an exciting one.

Aled has been in hospital lately to have some plastic surgery on his right hand. He had a lot more work done than was originally expected, but hopefully it will be okay. He had the dressings removed yesterday and his hand looks sore but otherwise okay.

Update 7th December 2007

Aled is currently getting very excited about Christmas, he had an angel visit him while he was sleeping one night (she left some angel dust on the bedside cabinet) and that really put him into the Christmas mood. He is playing Joseph in this year’s pre-school nativity, which we are looking forward to.

We are still awaiting the appointment for his hand operation that we are expecting sometime soon.

At the moment Aled is having lots of trouble with his bladder function, this worries us as he only has one kidney which we want to protect. Hopefully these problems will be sorted soon and won’t turn out to be a nightmare.

Many thanks to Post Pals for their support, Aled really enjoys receiving any mail and keeps it all for people to see.

Hope you all have a lovely Christmas and a great New Year.

Update 3rd October 2007

Another month has gone by and Aled continues to do well with his bowel management, we are changing the routine slightly by changing the equipment that we use, which we hope will make it a bit easier for him.

We had some bad news this month, Aled needs further surgery on his fingers, and this is quite a shame as he had an operation about 18 months ago to separate his webbed fingers but sadly they have rejoined. We have told Aled about the op and he is a bit scared this time (obviously getting older). Hopefully by the time he has it done he will be okay.

Many thanks to all the kind people that have sent cards and gifts; they are really appreciated.

Update 30th August 2007

Aled has had a rough time this month as he is struggling to deal with the intrusive elements of the bowel management. He is out of his nappies during the day though, which is a great confidence booster for him. His next step is to see the plastic surgeons about his webbed fingers; hopefully they can sort something out in the way of separating them.

Aled has had a steady flow of postcards etc over the months but this month has been lovely, he has been really excited when checking the post in the morning.

Update 2nd August 2007

Since Aled’s last update he has had a busy time. At the end of June he went to Cincinnati, Ohio, to a conference about people with VACTERL association. He had a really good time and made loads of new friends, all going well we will meet them in a couple of year’s time when they have the next conference.

These last few weeks have been spent introducing Aled to his new bowel management program. It has been a very stressful time for all of us and we are hoping that things will get easier over the next few months.

Update 10th June 2007

Aled has had a good month so far. He spent a week with his Nan in Wales which he really enjoyed.

He is now set for a busy couple of weeks with an MRI for Hydrocephalus and re-tethering of his spinal cord next week, followed by more hospital and clinic appointments.

After that he is going to Cincinnati for a week so that he can attend a VACTERL conference. This will give him, as well as mum and dad, a chance to meet other families and also to speak to some of the top VACTERL specialists in the USA.

Update 9th May 2007

Aled continues to do well. He has several appointments coming up with general surgeons which we hope will be positive for him. He is also waiting for an MRI to rule out a re-tethered spinal cord as well as to check for Hydrocephalus. He is still a happy and “lively” little boy who wins plenty of hearts. We have just completed his statement process, which was a bit of a nuisance, but hopefully he will get the help he needs at school.

Update 12th March 2007

Aled had a good month; hospital appointments had been quiet but Doctors not so because of chest infections etc. He is now well again and enjoying his time at pre-school.

Update 9th February 2007

Aled did have a quiet month until today when he has come down with a fever and is quite poorly with what looks like tonsillitis. Aled has seen the Urologist about his Neuropathic bladder; he is pleased with the progress at the moment and doesn’t want to see Aled for another twelve months.

Aled has enjoyed returning back to nursery after the Christmas break and is really proud of all his Christmas cards from Post Pals.

Update 27th January 2007

Aled is doing really well at the moment and continues to improve in all areas. We are trying to get him potty trained at the moment but because of his problems it may take a lot longer than initially expected, hopefully things will get easier with bowel management routine but that won’t be until late summer at the earliest. Aled is also noticing that his hands are different as he keeps inspecting each one in turn. We are expecting him to start questioning as to why they are different very soon; neither of us is looking forward to that day.

A big thanks to everyone who sent Aled Christmas cards and a huge thank you to Kate D and Beth Hughes who were Aled’s Elves this year. Aled was really excited about receiving them and was especially pleased with the monkey and power rangers.

Update November 2006

Aled has had a good couple of months, his asthma appears to be staying under control and so far he hasn’t had any serious attacks.

He saw the cardiologist recently who was very pleased with his progress and the reviews are now becoming less frequent.

Aled recently met up with 4 other VACTERL children; it was a good time to see how other families cope.

We are now getting ready for Christmas; Aled is getting more excited and seems to be looking forward to it.

Merry Christmas to you all.

Update 30th September 2006

We saw the orthopedic and plastic surgeon this month to see if there is anything that can be done with Aleds right arm and as expected they have said that things will have to remain the same as any surgery for cosmetic purpose would reduce any use that he could have with his arm.

Aled has spent a few weekends away in the caravan enjoying farm yard walks and egg collecting. He wasn’t too happy when he paid a visit to the dairy farm and the cows decided to do a Number 2 (if you know what I mean) right in front of him… it stunk!

Aled is currently highly interested in the power rangers and any other hero or villain that allows him to dress up.

A big thank you to Karen and Julie for all their post and comments on Aleds website.

Update 3rd September 2006

Aled is well and has just enjoyed a two week holiday in Holland. He enjoyed camping, even if it rained every day (bar 1).

He sees the plastic surgeon /orthopedic surgeon this month to see if they can make some sort of elbow for him as he is complaining of aches and pains in his arm.

At the moment Aled really enjoys dressing up to play and has just had a wooden train track for his 3rd birthday.

Thank you Post Pals, Aled has had a lot of mail and has really enjoyed receiving it. It really does make him smile when he receives a card or message.

Update 31st July 2006

Aled has had a busy month; it started with a meeting with other VACTERL children which took place over a weekend. Then Aled had his cousin and her friend come to stay for a few weeks which was tiring for his mum and dad but very enjoyable for Aled.

Thanks to Julie and Karen for their ongoing support, and a thank you also to Post Pals for your obvious support.

Update 1st July 2006

Aled had a lovely holiday with his Nan and Granddad, but now he has returned home he’s back into a round of hospital appointments. These appointments are to investigate problems with his ankles, as well as ongoing tests to his bladder.

Aled recently started swimming again for the first time since February and is really enjoying it. I think he enjoys getting his mum and dad wet more though!

Update 14th June 2006

Aled is doing well; he is still having tests carried out on his bladder to determine how much control he will have. These tests are likely to go on for a while, but hopefully they will give us a good picture about his future.

He is going on holiday with his Nan and Granddad in June which will give all the family a much needed break.

In July Aled is meeting up with two other VACTERL children; this should be a good time for the families as well as for Aled as it gives us a chance to share experiences.

Aled enjoys opening any cards he gets. We have kept them all so one day we will take a photo of him with them.

Update 15th May 2006

Aled is continuing to do well; he suffers from frequent bad asthma attacks which slow him down (but only for a short while). He has plenty of hospital appointments at the moment as all the reviews seem to come around together. He has just been diagnosed as having a Neuropathic bladder which isn’t a surprise to us because of his spinal issues. Hopefully the consultants can sort out some way of controlling it.

Thank you once again for the lovely gifts and cards.

Update 29th March 2006

Aled’s check-up with the plastic surgeon went well. He had an infection in the skin graft site on his hand so was given some antibiotics by the GP which cleared it up, but we went to see the surgeon earlier than planned in case it had been affected in some way. She had a good look at his hand and was pleased with the results. She also talked about the elbow (or lack of one) on Aled’s right arm; we are seeing her again in September with an orthopaedic surgeon to see if there is some way of making him an elbow. We’ll wait and see.

We had an interview with our local newspaper last week who did an article on Aled and the support group that we’ve have set up in the UK. We also had a radio interview a few days laterwhich Aled’s mum did. She was a bit embarrassed about it but did a very good job.

This week Aled had another bad asthma attack, we think it was caused by the onset of the cold. It proved to be a right nuisance as his mum was minutes away from leaving for work when Aled vomited all over his bed. That is a great sign of him having an asthma attack. It took a few days to get over it but now he is fine, except for the cold that is.

Update 17th March 2006

Aled had his operation to separate his fingers in February. All went well except for an infection which has now cleared up.

Thank you to everyone that has sent emails and cards, Aled really enjoys having the messages read to him and he shows all his cards to whoever enters the house. Many thanks to you all for your continued support.

Update 4th March 2006

Aled went back to have the dressings removed from his fingers last week, it went really well as he didn’t have any anaesthetic (the surgeon normally takes the dressings off under a general anaesthetic) because of a hospital mistake. The skin graft seems to have taken okay and the fingers look okay, just a bit red and swollen. Aled has to go for another check up in about 3 weeks; hopefully they should be all sorted by then.

He had a session with his OT and PT this week, the physio seems to think his ankles need to be seen by a Pediatrist to get an experts opinion. He has also been diagnosed as anaemic so is now on iron supplements.

Update 18th February 2006

Aled went into hospital on the 9th Feb to have his fingers split. The operation went well, but he was really upset when he came out of recovery because his arm was strapped to his chest to stop him from taking the bandages off. Aled has had quite a lot of pain with it this time… his mum says it might be because he is older and feels it a bit more.

Aled go back to Birmingham on Thursday to have the dressings removed on the Friday which he am not looking forward to as it will be a bit sore but it has to be done.

While Aled was in hospital he received a big poster from America which was made up of loads of cards made by children. Each one was wishing him well. It was really smart!

Update 31st January 2006

Aled has had a fairly quiet month with the exception of a few bad asthma attacks. These now seem to be getting a bit better to control which makes life a little less worrying.

Aled has his next operation to split his syndactyly (webbed fingers) on the 10th Feb. This will also include a skin graft from around his groin, so please keep him in your thoughts that day.

Update 30th December 2005

Many thanks to all at Post Pals for such a lovely Christmas and special thanks to Karen who was Aled’s elf; you made his day extra special. Thank you to all the kind people that sent cards, your generosity is incredible. Post Pals has shown us that there are a lot of kind and thoughtful people who will go out of their way to make others happy… Thanks.

Aled has had a fairly quiet time lately, he, as well as his mum and dad have been really touched by the generosity of people around the world. He has received parcels from Canada, USA as well as here in the UK. The support he has been given has been immense. Thank you.

Two weeks before Christmas Aled had what we thought was a chest infection; as usual it started just in time for the weekend so we had to see another doctor rather than his GP. He confirmed that it was a chest infection and gave him the usual antibiotics. After a further 24 hours Aleds breathing was in excess of 60 a minute so we saw his own GP who sent him straight to hospital.

After loads of tests and X-rays the Paediatrician said that it wasn’t a chest infection but a chronic Asthma attack. He was given loads of inhalers and kept in the hospital for the day. The good thing about staying in there for the day was that we got to meet the Plymouth Argyle football players who gave Aled a hat and were about to give him some gloves until they noticed his hands and gave him some sweatbands instead. Aleds Asthma seems to be under control and he was well again for Christmas.

Aled was really excited about Christmas, especially when we placed Rudolph’s glitter food outside on Christmas Eve. When he woke up in the morning he opened his stocking and was really pleased so he shouted ‘thank you Father Christmas!’

We are still waiting for a date for Aleds next operation on his right hand, hopefully that will be soon after the New Year.

Update 19th November 2005

Unfortunately Aled has been poorly this week with a viral infection. Aled also saw the cardiologist this week who says the patch on his heart is really good and doesn’t leak, but he has a leaky heart valve which the doctor will keep an eye on.