Living with Spina Bifida and Hydrocephalus




My name is Louise Larkin, I am 39 years old.  

When I was born on the 29th December 1976 I was rushed off to Our Lady’s Hospital for sick children. The doctors told my mam and dad that I had spina bifida and hydrocephalus. When I was taken to Our Lady’s I was rushed down to the operating theatre to get a lump of fluid from the end of my spine.  

The day I was born my dad went home and told my grandparents on both sides of my family, and my aunts and uncles, that I had a disability called spina bifida. When I was a few days old the doctors told my mam and dad that I would only live to see a few days, but as time marched on my mam was determined to get me walking 

The doctors then told my mam that I would never walk,but with my mam’s determination she helped me walk. When I took my first step I was over in my nanny and grandpa’s house. My mam and dad had gone out for a while. My grandpa stood me up against the wall and I took my first step with the shock my grandpa had to get a glass of brandy (just a small one!) for my nanny to steady her nerves as she was so shocked to see her first born grandchild walk for the first time. After that I never walked until I was 4 years old.  

One Tuesday morning my mam brought me up to the hospital for my check up and Professor Guiney said to me, whilst he had all his junior team around him, ‘Louise get up there and show the doctors how you can walk’, so I walked up and down the corridor, Professor Guiney said to his team, ‘this little girl was never meant to walk, and just look at her now. 

I started school at the age of 4 in a school for people with physical disabilities called ScoilMochua. When I was 8 years old the principal said to my mam that I would be well able for main stream school. Then in 1985/86 I started at Loreto College in Crumlin, I attended here for 9 years. After this I was doing different courses, for example retail management, Disability & Healthcare FETAC level 5, and I am now currently studying Social Studies in Inchicore College, which is also a FETAC level 5 course. I went back as a mature student to college to see if I can get a job in the social care sector.  

I got married to the love of my life Gerard who also had spina bifida and hydrocephalus on the 14th of February 2012. It was the best day of both our lives. Gerard’s parents were told the same when he was born that he would not live, but both of us proved all the doctors wrong. 

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Attention all former Scoil Mochua pupils

Scoil Mochua Reunion

Location: Green Isle Hotel
Date: Friday 13th May 2016
Time: 7pm till late (meal at 8pm)
Cost: Tickets are €20 and are available in the school on the 6th and 13th of April from 10am-3pm. They will also be available to purchase in the IWA Lucan on the 6th of April

For more information please contact Scoil Mochua directly - (01) 457 4876, thank you.

The way our Family Support Worker service is set up

Understanding the current Family Support Worker team practice

A message from SBHI CEO, Tom Scott - February 2016

Since beginning with SBHI in July 2015 I have been working hard to learn about every aspect of the organisation. This has informed a short-term plan to give the charity the best foundation ahead of launching a five-year strategic plan in October at the 2016 Annual Conference.

It is inevitable that along the way we will experience difficulties in this process, and one such difficulty is an understanding of the way the Family Support Worker team is currently structured.

It is important to note at this stage that work will soon be underway to review the work of the FSW team, as with every other aspect of work at SBHI, and that we will be seeking to overcome both historic and current challenges with the service.

One of the most significant areas of this work which I believe needs to be clarified is that the Family Support Work is a referral service. This means that people are either referred to the FSW, or the individual/their parent or carer refer themselves to the FSW.

To be completely clear here, referral means that you can contact your Family Support Worker if you have a question or an issue you would like support with at any stage. Just like booking an appointment for a clinical service, it is typically necessary to book in for a visit or a meeting. Please note there may also be a waiting period for letters or actions to be followed up on.

I am very aware that there is a feeling from some that FSWs should be calling all those in their area with a ‘checking in’ approach, and consideration of how this need can be met by SBHI is something that will be included in the review of the FSW role. However, at present there is neither the plan present, nor the resources available to provide such a service.

It should be noted also that when a FSW is off sick or is on annual leave, there is a clear message left on both phone and email to direct people to the National Resource Centre so that follow up can be offered.

I can assure you that whilst we know that the service needs improving, everyone of our small staff team wants the very best for everyone affected by Spina Bifida and/or Hydrocephalus. The workers cover significant geographical areas and there has been an increase in demand recently, leading to a further test on resources. If you can offer us the benefit of the doubt in this respect, I know that we can move on positively together.

I was waiting until tomorrow to announce the good news that the new FSW to cover Clare Riordan’s role in Dublin, South County Dublin, and Wicklow will start this week, however given that I have heard this to be one of the concerns raised, it is with great pleasure that I can share with you that Verena Mähr-Byrne will begin with SBHI this week. Verena is really looking forward to getting started and supporting everyone is this area who has the need for support.

The message I started with at SBHI in July remains the same today - if there is something you wish to feedback to me then you can get in touch any time - by phone, email, letter, social media, or whichever way works best for you. The negative effects of discussions taking place behind closed doors inevitably make their way to those who are genuinely seeking to do the best job they can. I encourage anyone who wants to let us know their thoughts - whether good, bad, or ugly - to get in touch in a constructive way so that SBHI can be the best service possible to you going forward.

These are my contact details:

Telephone: 087 1121500
Twitter: @TomScott_SBHI
Post: National Resource Centre, Old Nangor Road, Clondalkin, Dublin, D22 W5C1

The work which I have started, and which will take some time to develop in terms of long-term change, is very much underway. The best approach to being a part of this, and for us to ensure that it is as relevant as possible, is to work in a positive way to be the change we want to see. I look forward to hearing from you and to working together towards this way of developing SBHI, our work, and the support required.



Tom Scott





“With determination and hard work anything can be achieved”



My name is Áine Mc Donnell, I was born on the 9th of June 1976. My parents were very young when they married, I came shortly after – a much anticipated and looked forward to new baby, and the start of a new generation for my parents. I was their first born and the eldest of five children. I live in Belmullet, Co Mayo. which is a very rural, isolated area in the West of Ireland. I live with my parents at the moment but I am hoping in the near future to move into my own purpose built home in my local community. 

I was born in Mayo General Hospital in Castlebar, and I have Spina Bifida and Hydrocephalus. This came as a huge shock to my parents, especially my Mother. There were very few scans in those days so it wasn’t known until I was born that I had a disability, my Mother was a young woman and although she trained as a nurse, this did not prepare her for a new baby born with a disability.

I was immediately transferred to Our Lady’s Hospital for Sick Children in Crumlin.  My Mother often reminisces about my first few months of life and how sick I was. She vividly remembers that she did not see me for two weeks after I was born because of the distance between Mayo and Dublin. I spent many months in Crumlin in that first year undergoing the start of a myriad of surgeries that would be performed throughout my life. My parents have told me I had over one hundred surgeries by the time I was three years old. They have also told me that my story is a story of survival against the odds.

My childhood was one of many hospital visits and medical procedures, but it was also one of happy memories and the knowledge that I was surrounded by a family who loved and cherished me for who I was and for who I have become. I have parents who always wanted the best for me and encouraged me to be the best I could be.  My Dad was a teacher in the local vocational school and my Mum was a nurse. 

It is because of them and their unwavering support and encouragement that I was educated in the local primary and the vocational school. At 18, I went on to achieve 5 honours in my Leaving Certificate, despite being out for many months due to surgery. School life wasn’t easy and I had to work very hard and had many challenges to face along the way including being bullied for most of my school life, but I strongly believe that as the saying goes, “What doesn’t kill you makes you stronger”. I had some amazing teachers including my wonderful Dad who encouraged me and brought out my potential. I always loved reading and my parents remarked that I was “reading the newspaper” before I could talk!

I have always had a thirst for knowledge and when I was twelve I found my flair for writing and have been writing since. I first attended college in University of Ulster, Coleraine and then in UCD, Dublin. These attempts at a college education unfortunately did not work out for me for many reasons, however I am also of the believe that there is a calling for everybody and I finally found mine at the age of thirty eight. In April 2014, I participated in a Job Shadow Programme in conjunction with the Irish Association for Supported Employment in the head office of Irish Wheelchair Association (IWA).  I worked for a week in the Communications Department with Anita Matthews who is the Public Relations, Communications and Marketing Coordinator with Irish Wheelchair Association. I loved every minute of it and it was then I realised I wanted to work in Public Relations, it was because of this week and Anita’s encouragement that I tentatively decided to give further education another go.

I enrolled in a Diploma in Public Relations with Event Management, it wasn’t without it’s difficulties and there were many times when I became very discouraged and I honestly thought I would never complete it but, I am proud to say that I have now successfully completed my Diploma. I hope to undertake a postgraduate in a few months time, but haven’t quite decided what I will do it in yet.

My family and friends and the wonderful teachers and mentors that I have met along my path of life have shown me that with determination and hard work anything can be achieved.


SBHI - Meet the Member - Sean O'Kelly


From the year before I was born in 1992, my grandmother kept a daily diary which she gave me to read for the first time. Until I read them I had never really realised or understood how much I meant to my family or how much they adored me from the minute I was born.

My family have told me in the past that I am a miracle and that I wasn’t expected to survive… In fact they brought me home from hospital when I was seven weeks old because I was so ill the doctors had given them no hope for my survival.

Before I was born, when my mum was having one of her final scans the doctors told my parents that I had fluid in my kidney but that it’s not uncommon and that it would go, which it did. But what they didn’t detect was that in my case it was in fact a sign that I had Spina Bifida.

When I was introduced into the world, my parents got a bit of a surprise and they had to accept that their first child had a disability. They didn’t know anything about Spina Bifida when I came into the world.

I was brought to Crumlin Hospital and at two days old I had surgery to close the lesion on my spine. When I was six days old I got Meningitis. That was very scary for my parents and my family. They weren’t sure whether I would survive or not. It was Christmas Eve and I was in Intensive Care. I battled through and the doctors were hopeful that there had been no damage done by the infection or the treatment (a side effect of the antibiotic being put directly into the fluid in my head was that it could make me deaf).

I was six weeks old when I suffered a bulbar palsy and completely lost my swallow. The doctors seemed unsure why this had happened. I could not feed and as I couldn’t even swallow my saliva I had to be suctioned about thirty times a day… back to intensive care.

A week or two later my parents decided to bring me home with a mixture of fear but also of joy, as they were getting to bring me home for the first time. As very few people had been allowed to visit in hospital our home apparently became like Central Station! I was given about 100 cuddly toys by well-wishers. There were prayers storming heaven, candles blazing in local churches, and my Moses basket resembled a grotto with various Saints’ relics.

The team of doctors could give no medical explanation for my survival over the next few months. My feeds through the NG tube were increased very gradually and with lots of suctioning my family managed to protect my lungs. As I grew stronger my parents worked with a speech therapist at Enable Ireland and with the help of a soother (which I loved) they started to give me drops of milk and by my first birthday I was able to take my first bottle of milk without aspirating.   

When I was about 2 or 3 I went to pre-school in Enable Ireland and from there went to junior infants in St Anne’s, Dun Laoghaire. At that stage I was wearing callipers and walking with a little frame. When I was 7 years old I went to Monkstown Educate Together National School. At this stage I got my first wheelchair and adored the independence it gave me which included getting lost in Faro Airport!

Secondary school at Newpark Comprehensive was a very positive and happy experience for me. I have made lots of friends and in my graduation speech I thanked the teachers and my 140 fellow students for making me realise that I am a person with a disability… and NOT a disabled person.

After I left Newpark I went to BIFE (Bray Institute of Further Education). In BIFE I did three courses; a course in IT which was a FETAC level 5 course, I then I went on to do a course in Business and IT which was another FETAC 5 course. As a follow on from this course I did a FETAC level 6 course. I split this course over two years

For about a year or so, my parents were encouraging me to start the process of learning how to drive when I was around 20 years of age. I put it off for a while both mentally and physically because I thought it was a pretty daunting idea. In 2014, I had decided to start the long process. This was a huge step as this was the start of real independence for me. I am now nearly test ready.

This year I started at in Blackrock Further Education Institute, studying a course in digital and social media marketing which I am really enjoying. I am doing this course while on the job hunt.

I have been on a couple of fantastic ski holidays which I never imagined could be possible. I have a wonderful girlfriend who is very special. Her name is Megan.

You can connect with Sean on Twitter - @SeanOkelly92 and/or Facebook -

Press Release - 'Smart Dressing' to Transform Wound Care


From the Tyndall National Institute, Fleming Medical and Holst Centre (Netherlands)

Irish and Dutch Researchers Develop "Smart Dressing" To Transform Wound Care 

Tyndall National Institute, Fleming Medical and Holst Centre (Netherlands) develop 'DermaTrax' smart dressing to monitor wound healing 

CORK, IRELAND, December 2, 2015 - Manually removing patient dressings to visually inspect chronic wounds could soon become a thing of the past. Ireland’s leading ICT research centre, Tyndall National Institute (Cork), has teamed up with medical equipment provider Fleming Medical (Limerick) and Holst Centre/TNO (Eindhoven, Netherlands) to develop the world’s first commercially-available “smart dressing” for use in futuristic wound care applications. Chronic wounds are an increasing and costly healthcare issue, particularly in countries with ageing populations. The “smart dressing” will make wound care easier, more comfortable for the patient, and more cost-effective for healthcare providers.

The smart dressing, called 'DermaTrax', contains sensors that monitor conditions in a patient's wound, including its temperature, moisture and pH. DermaTrax will autonomously monitor both the condition of the wound and the dressing itself, relaying information to a nurses' station via a wireless link. Nurses and other medical staff can be alerted to the possible presence of infection and other healing issues without the need to remove the dressing, which can disturb the patient and interrupt healing. The miniature sensor module will be flexible and thin enough to fit inside a typical dressing without affecting the patient's comfort. 

Mark Fleming, CEO of Fleming Medical, said, “DermaTrax will revolutionize current practice, which involves the manual removal of a dressing and visual inspection of the underlying wound. This is time-consuming for the nursing staff, uncomfortable for the patient, and disturbs the natural healing process. This hi-tech dressing will generate significant savings in healthcare costs, due to reduced clinical inspection time and shorter hospital stays as a result of faster wound healing. 

As Dr. Conor O’Mahony, project leader at Tyndall, explained, “The cost of chronic wound-care can be very high. For instance, in the UK alone, around 200,000 patients are treated for chronic wounds yearly at an estimated annual cost of £4 billion. Because of this cost, it is vital for patients and the taxpayer alike that these wounds are managed effectively.”

Dr. Paul Galvin, Head of ICT for Health at Tyndall, noted that exciting developments such as these are expected to play a major role in the ongoing expansion of health-related technology projects at the Cork institute, which anticipates involvement in medical projects worth over €10M by 2018. He explained that collaborations like the project with Fleming Medical are producing broad benefits to Ireland's medical research and development industry.

 “This smart dressing product will not only result in a significant addition to Fleming Medical’s product portfolio – it will also increase Ireland’s standing as an international hub for medical device research and development,” said Dr. Galvin.

Dr. Jeroen van den Brand, Program Manager at Holst Centre/TNO adds to this, “Our research focusses on integrating sensors and electronics into flexible materials, without compromising the characteristics of these materials.  One of our activities is the development of health patches that measure vital signs varying from skin temperature to ECG. Applying this knowledge to the development of smart dressing fits perfectly with in the scope of our research.

The collaboration between Tyndall National Institute, Fleming Medical, Holst Centre/TNO and Philips Innovation Services is funded by the European Union’s Horizon 2010 Ecsel Joint Undertaking programme under a public-private partnership project codenamed 'InForMed' (grant nr. 2014-2-662155), which is led by Philips Electronics Netherlands BV. The consortium comprises 39 partners from 9 countries, who aim to form a manufacturing ecosystem where new medical devices can be seeded and nurtured to grow into new business opportunities. The project is co-funded by grants from national organisations around Europe, including Enterprise Ireland.


Press Release - NAI on the latest SSNO funding concerns

From the Neurological Alliance of Ireland - 23rd November 2015

National umbrella body for neurological charities extremely concerned at evidence of interference in SSNO funding scheme

The Neurological Alliance of Ireland (NAI), the national umbrella for neurological charities, is extremely concerned at news over the weekend that funding awarded under the SSNO scheme in 2014 was subject to Government interference. The RTE "this week" programme found evidence that Minister Phil Hogan overlooked independent advice and awarded funding to IASE (Irish Association of Supported Employment), despite the fact that their application was outranked by other applicants, who subsequently failed to be awarded funding under the scheme.

The news adds to the concerns of the umbrella body that the administration of the scheme in 2014 was flawed. Speaking today, Mags Rogers Development Manager NAI noted" This confirms the concerns raised by organisations of a lack of transparency in the grant awarding process.The scheme is to be readvertised in 2016 and we are calling for an immediate comprehensive review of the scheme and its administration to ensure that this does not happen again. Serious questions need to be asked as to how this interference was allowed to happen".

All twelve neurological organisations previously funded under the scheme were turned down for funding in 2014. The NAI has previously expressed serious concerns at the inconsistency and lack of transparency involved, including making decisions on the basis of criteria that were not clearly outlined in the application process.

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