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Corpal AGM 2015

This weekend was the 2015 Corpal AGM, held near Heathrow airport and attended by families of children with ACC (as well as a couple of lovely adults with the condition). It's a chance for families to socialise and support each other, but also to get more information on the condition and to find out what professional support is offered. 

This was my first AGM and like a few of the parents I met who were attending for the first time, I didn't quite know what to expect. After an early start for us, we arrived before things started and then I was ready with my camera (as always!) to try and help capture moments during the day. I've got lots of lovely photos of the children but will share most of those on the Corpal Facebook group rather than here, if you have a child with ACC you might like to request to join as it's a great source of support. 

Upon arrival guests sign and get a name badge, then there's tea and coffee available and a chance to mingle, talk to some of the specialists in attendance and to socialise with other families. The children were happy making friends, playing games and doing a bit of plane spotting as we were so close to the airport. 

 

Welcome to the AGM

 

We had a rather wonderful cake stall set up and manned by the chief chef, which raised some more money for Corpal. I think a day is always improved by the availability of delicious cakes!

 

Chief chef and cake seller

 

Really good cake!

Dr Rhonda Booth, who is a Research Psychologist and Teaching Fellow in Neuropsychology from University College London attended and spent time talking to parents individually. She also talked a little to everyone about a project she is working on with Corpal to produce a leaflet for families and medical practitioners about the conditions, we hope that this will be a big help in the future.

 

Dr Rhonda Booth

 

There were also other organisations represented, such as The Challenging Behaviour Foundation, which were a great source of information for some of the parents that attended. 

 

Balwinder Sandhu, from The Challenging Behaviour Foundation, talking to parents

 

There was an exciting announcement from Corpal as we've been working on a children's book about ACC, it's to help explain ACC to small children with the condition, but also for their siblings, friends and relevant adults in their lives. I wrote the book (so it was extra exciting and nerve-wracking for me) and the beautiful illustrations were done by Loretta Chantry-Groves. The book proved to be popular with people at the conference and a few have made their way back to America with Dr Lynn Paul and hopefully we'll be able to make them easily available there too. More information on how to purchase the books will be on our website soon. 

 

Our new book, Me and My Brain, What is ACC?

 

I think the highlight of the day for many of the parents, myself included, was the talk by Dr Lynn Paul, who had travelled from America especially to talk at the AGM. Lynn is the founding president of the NODCC (National Organization for Disorders of the Corpus Callosum) and has spent many years researching disorders of the corpus callosum and its outcomes. She talked about the brain and how a partial or complete absence of the corpus callosum can impact on how it functions. There was information on how the condition affects children and what issues seemingly unaffected children will probably face in the future and how as parents and carers we can support them. The talk was so useful and we hope to be able to share some more detail on it at some point. 

 

The lovely Dr Lynn Paul giving her talk

 

While the talks were taking place the children were being entertained in the next room, I ducked out a couple of times to get photos and it was lovely to see them all having such a great time. There was much joy towards the end when the balloon swords made an appearance!

 

The children's entertainers

 

 

Fun with balloons!

 

Then it was the end of the AGM, the committee members had been reinstated for another year, new friendships forged and a few tears had been shed. It really was a wonderful event and I cannot wait to attend again next year. I shall add a few more photos of the day below. 

 

Looking super in a Corpal t-shirt

 

Mother and daughter smiles, Leanne is also on the committee.

 

Vicky, chair of the Corpal committee

 

The lovely Yvonne (also on the committee)

 

Friends catching up

 

A little wave

 

A lovely young man with ACC

 

My little one with ACC playing a game on the floor

 

Lovely smiles

 

 

 

 

Disclaimer: 

The opinions expressed by the author/contributor of this blog and those providing comments are theirs alone, and do not necessarily reflect the opinions of Corpal or any member, trustee or employee thereof. Corpal nor its trustees or members are not responsible for the accuracy of any of the information supplied in this blog.  Information contained therein is provided on an "as is" basis and is used at the users own risk.  The author/contributor reserves the right to make amendments at its sole discretion without prior notice.

 

 

Clinical neuropsychologist

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Arthur's Story

This is the start of the Corpal blog, a place where I hope to share people's stories and experiences. If you would like to share your story please do get in touch as I'd like to feature a range of experiences on the blog. I thought I would start by introducing myself and telling you about my experience. Sorry if it's a bit long!

My name is Corinne, I am on the Corpal committee and I write a blog elsewhere about my life with my 4 (soon to be 5!) boys. My eldest son is 16, then I have a 5 year old, 3 year old and my youngest is 18 months. We live in Sheffield and home educate our younger children so it's a busy household. 

Having had 3 boys, my 4th pregnancy didn't go as planned. At the dating scan we discovered there was a problem with the baby, an amniocentesis showed that our daughter had Edward's Syndrome, her head had not developed properly and most of her internal organs were outside her body. We felt unable to continue with the pregnancy, feeling it wasn't fair on her or her brothers. 

As I'd had a baby with Edward's Syndrome my next pregnancy was monitored carefully and I saw the consultant regularly during the first 20 weeks. The consultant was more than happy with the baby's development and was getting ready to discharge me from his care. Then I went for the anomaly scan in the regular department and everything changed. 

They did all the checks on the baby and were taking a long time looking at his head, the sonographer said "I just need to get a colleague to help me check some measurements" and I knew at this point that something wasn't right, it's exactly what they said when we had the scan of our daughter. Another person came in and scanned me too and said she thought she could see something abnormal on the baby's brain. They arranged for me to go straight across to see my consultant where he also scanned the baby. He said he couldn't see what they could see, that he felt they were probably seeing something because of my previous pregnancy, but he would arrange for an MRI scan to confirm. He fully expected that everything would be fine. 

A few days later we returned for the MRI scan, I felt absolutely fine about it because I felt so confident in what my consultant had said, it was just to confirm there was nothing wrong with our baby. The scan was uncomfortable and so loud. The machine makes lots of loud clicks and bangs. It vibrates constantly. Thankfully I was given headphones and they put on some classical music, I breathed and concentrated on connecting with my baby.

Once the scan was complete I got back into my clothes and waited to see the specialist who had promised to talk us through the results as soon as she had looked at the images. She took us into her small office after about 10 minutes and broke the news, the baby was missing a large part of his brain, the Corpus Callosum, She said that on the range of mild to severe disabilities she expected our baby would be somewhere around the middle. She called our consultant and he said he'd see us straight away. 

We returned to the antenatal department in utter shock, I remember saying to my husband that no matter what we would keep our baby and love him. Thankfully my husband agreed completely. Our consultant seemed equally shocked at the diagnosis, he talked us through the problems our baby could face, mentioning issues such as epilepsy. He said that due to the severity of the condition we could consider a termination and wouldn't be limited on when we could have it. We made it clear it wasn't an option for us.

We were utterly shell shocked and devastated by the ACC diagnosis but we were clear from the start that we would continue with the pregnancy and cope with whatever issues were thrown at us. Well meaning friends and family suggested we consider a termination for the sake of our other children, I just believed that having a brother with a disability would only make them stronger, better and kinder men.

My pregnancy continued with regular check ups and scans. I was fairly anxious about the birth as I was told there was a risk of the baby not breathing when he was born. In the end I was offered induction at around 40 weeks and I agreed, my anxiety levels were through the roof and I knew that I just needed my baby in my arms. In the end I was in hospital for a few days waiting to be induced, finally on my birthday a midwife came in and sang "happy birthday to you, we're ready to induce you!" Having never wanted to share my birthday I was just thrilled to know I was going to be induced at last. 

My labour went well and in the end progressed quickly. The pessary didn't really take, but then a hormone drip was put in and within a few hours I was ready to push. They'd discovered that the baby's heart rate was dipping with the contractions and decided to 'help' the birth with a ventouse. The doctor explained what was going to happen but having experienced this with my first son's birth I was determined to push my baby out myself. By the time the doctor had everything prepared I had pushed with all my might and our baby boy had arrived! 

Initially he wasn't breathing and it was probably the longest few moments of my life, they quickly cut the cord and whisked him to the baby care platform thing they had in the room. By the time they got him there he breathed on his own, after being given a little oxygen he was brought back to me and he fed immediately. He was amazing, perfect in every way and I was relieved that I felt a complete rush of love for him. We called him Arthur.

 

 

I was allowed home the next morning as we were both doing fine. However, our time at home was short lived as we woke on the first night to find him having a seizure. It was absolutely terrifying and it felt like all our worst fears were being realised.

Arthur and I were taken by ambulance to the local children's hospital, I think I still expected to be told everything was fine and we'd be sent home again. The staff were incredibly kind, bringing me tea and making sure I was OK. They found that Arthur was having trouble maintaining his oxygen levels and he was admitted to hospital. I stayed with him the entire time, I was breast feeding him so he needed me there. Gareth would visit with the boys every day but it was an incredibly difficult time. We were in for a little under 2 weeks, they discovered he had sleep apnoea and he was given a caffeine treatment to stop him going into too deep a sleep. We were given first aid training and sent home with an apnoea alarm which would sound every time he stopped breathing. 

The first 6 months felt like round after round of consultant appointments, he saw specialists for his brain, eye sight, hormones and goodness knows what else. He was referred for physiotherapy as physically he was slightly delayed. After 6 months he was able to come off the medication as he had grown out of the sleep apnoea, they think his brain was simply a little under developed. 

As it turns out we have been incredibly lucky, everything seems to be developing "normally" in Arthur and he hasn't experienced any more seizures. He is now 18 months old and is toddling around. He is a happy and bright little boy who adores his big brothers. The only issue we can see for now is a lack of language skills, he's never really babbled and he doesn't have the words you'd expect from a child his age. However, I'm not overly worried as he has big brothers and so very little need to talk, gestures seem to get him what he wants! We are learning Makaton with him, at the moment he can sign "cake" (very useful) and "dog", he loves animals and generally it's either a "dog" or the same sign while shaking his head as if to say "not a dog". 

It will be interesting to see how his development continues, I worry much less now than I used to. For the first 12 months I obsessed about "normal" and "abnormal" development and then I reached a point where I realised he would learn things when he was ready. I just want to enjoy time with him and his brothers so that's what I'm doing.

 

 

I discovered Corpal shortly after Arthur was born and have found it a great source of reassurance and support. It was lovely going to the North of England meet when Arthur was very small and meeting other children with the condition. The Facebook page is a great place for talking to other parents who get how it feels. Part of my role is adding new people to the group and I sometimes find myself talking to women who have had an ACC diagnosis in pregnancy and I just hope that speaking to someone who knows what a scary time it is helps them a little. 

Anyway, that is my story, there should be more from some of the other committee members coming up and if you'd like to share yours please get in touch. My email address is This email address is being protected from spambots. You need JavaScript enabled to view it.

 

 

 

 

Disclaimer: 

The opinions expressed by the author/contributor of this blog and those providing comments are theirs alone, and do not necessarily reflect the opinions of Corpal or any member, trustee or employee thereof. Corpal nor its trustees or members are not responsible for the accuracy of any of the information supplied in this blog.  Information contained therein is provided on an "as is" basis and is used at the users own risk.  The author/contributor reserves the right to make amendments at its sole discretion without prior notice.

 

 

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