Matthew Paskin by Judith Paskin

We came across the Ann Conroy Trust, like most people, in a desperate attempt to find out what it meant to have an CM. It has been really interesting reading the recent Ann Conroy Trust Newsletter, featuring the case studies of the two children, Jessica Leigh and Cerys Carlson, as our own son, Matthew, also had decompression surgery. Matthew's diagnosis bizarrely came about as a result of investigation into recurrent urinary infections. He was 7 when he was first referred to a renal consultant/paediatrician at the brand new Oxford Children's Hospital. We are very grateful to her for persisting in her investigations, when initial tests showed everything was normal. Daily prophylactic antibiotics kept infection at bay however, my husband and I felt something was still not quite right. So his consultant arranged very quickly for him to have a test done under general anaesthetic where a camera could examine his bladder internally. This test finally gave a clue that things weren't quite as they should be. The urologist had noticed that the wall of Matthew's bladder seemed thicker than it should be which suggested that his bladder was having to work harder than normal. He suggested Matthew might have a neuropathic bladder, and therefore it was necessary for him to have a routine MRI scan.

We weren't unduly worried at this point as it was only a remote possibility there was anything serious wrong. However, things took a rather abrupt turn for the worse a few months later while we were waiting for the scan appointment. Matthew had been complaining off-and-on about pins and needles in his hands and feet but started mentioning it on a more regular basis. He also seemed to have lost a bit of physical stamina in his arms and legs, and was struggling to swim a length of the swimming pool, race across the football pitch or ride his bike very far. This deterioration was enough for the hospital to bring the date for the MRI forward. Fortunately they decided to do a full body MRI scan (Matthew was under general anaesthetic) which revealed the CM. His paediatrician rang us at home the next day with the news and I have to say we fell apart somewhat. Mostly because we didn't really understand what it meant or what the prognosis was.

As is usually the case with bad news, it took 24 hours for it to sink in properly. The paediatrician was so understanding of how hard it is to take in information verbally, and kindly wrote us a letter explaining everything as clearly as she could and pointed out that we would see a paediatric neurologist very quickly.

That's when the next leg of the journey began! In some ways it was a relief to know that there was a specific underlying problem creating all these minor health issues for Matthew. And we felt a lot better when we met up with his neurologist Mr Jay Jayamohan in August 2007. Mr Jayamohan took wonderful care of our son. He has a fantastic way with children (and parents!) that somehow took much of the fear and uncertainty out of the situation. He explained the condition to us, showed us the MRI pictures and told us that there was no urgency for surgery. It was difficult to take that news in, as we had assumed once you discover an abnormality, you quickly made arrangements to correct it.

He very patiently went through everything with us and explained that the decision whether or not to have surgery would be relative to Matthew's quality of life. At the time Matthew's symptoms had completely settled down again and virtually disappeared, but as he was obviously a growing boy, there was every chance that they would flare up again when he next had a growth spurt. So, feeling a lot less panicked, we left the hospital with an appointment to return in 3 months and the reassurance that we could call at any time if anything changed earlier than that. Once again, Matthew's situation changed around the time of our next appointment in October 2007. We noticed that he was starting to curl his toes round under his feet. When we asked him about it, he said it was the only way to stop the "stretchy" feelings in his feet. Mr Jayamohan examined Matthew again and said that his ACM was causing the problem but he didn't necessarily need to operate just yet. He arranged for physiotherapy to try and relieve the problem.

That Christmas Matthew obviously had another growth spurt and started getting quite bad "stretchy" feelings in his hands as well as his feet. He also found it difficult to get to sleep because of the discomfort in his legs. So we began 2008 with yet another trip to the hospital. This time Mr Jayamohan said that he felt the time was right for surgery, as things were progressing quite quickly. My husband and I went back to see Mr Jayamohan on our own a few weeks later, so that he could explain in detail what the operation involved, the risks, etc.

So the operation was set for Wednesday 26th March 2008 and he was admitted the day before. That Tuesday evening was very stressful for all of us. Matthew seemed very calm about what was going to happen and listened carefully when Mr Jayamohan explained what he was going to do in theatre and how Matthew might feel after the operation. However, Matthew's anxiety finally got the better of him about midnight when he felt very sick with nerves. Talking to him in the wee small hours helped and I was amazed how mature he seemed for an 8 year old. He went down for surgery about 8am the next morning. The next few hours seemed to drag on forever, but the nursing staff were very kind and rang down to theatre for an update after a few hours. It helped to know everything was going according to plan.

I'm not sure how long the operation took (it's funny how you forget some details but remember others), but we were so relieved when we had the call to come down to the recovery room to see him. We had no idea what to expect, but had prepared ourselves to see a very sickly looking child. What we weren't expecting was to see our little boy, with good colour in his cheeks, negotiating with the doctor to get a play station on the ward by 7pm when his cousin was due to visit! He quickly drifted back to sleep, but it really amused us that, despite brain surgery, nothing much changed when it came to our son's priorities!!

As it turned out, he was too groggy to play any computer games that evening and was still on morphine for a few hours. It was interesting how the children are able to administer their own pain relief through a clever mechanism. Matthew had to blow into a little straw when he felt the pain get worse, and it delivered just enough painkiller to relieve him. By the next morning, the morphine was taken away and he was on Calpol and Nurofen. He was looking much brighter, eating a little, and yes, playing on the play station in bed! Mr Jayamohan visited him and said Matthew had to try to move his arms and legs so that he could sit up in bed. But Matthew was determined to go further and three days after his operation was sitting up in the chair by his bed. Not long after that he was racing around the ward with me chasing after him in case he fell!

The nursing staff in the special surgery ward were amazing. So kind, caring and gentle with him. It was humbling to hear some of the other parents' stories about their children who faced serious illness and an uncertain future. We felt blessed to have our child so far along the road to recovery. We left hospital on the Monday, 6 days after being admitted. Matthew's recovery remained a speedy one. Indeed the only post-op problem he had was the occasional headache during the first few days, ironically only when he laughed!

Matthew returned to school about two weeks later, doing a half-day for the first couple of days before returning to his normal routine. He was playing football and all the other sports he loves (as well as street dancing!) within a matter of months. If it wasn't for the faint line of the scar which you can just about see under his hairline, you'd never know he had had brain surgery.

The following year was wonderfully uneventful and we were amazed to find that the operation seemed to have cured Matthew's bladder problems as well. This was remarkable as we were aware that the aim of the operation was to stop his symptoms getting worse and there was no guarantee that it would cure any existing problems.

In December 2009 Matthew started getting mild "stretchy" feelings in his hands and feet again, so we are not completely out of the woods. We saw Mr Jayamohan again and things quickly settled down as Matthew came out of the growth period. It is immensely reassuring to feel that his doctor is keeping such a close eye on him and we're confident that he will get the best treatment anyone could hope for. We feel so privileged to have such a wonderful hospital with such dedicated and talented staff here in Oxfordshire.

Judith Paskin