Raising awareness of Spina Bifida and Hydrocephalus is very important, both to educate the general public about the conditions and to help take the fear out of the initial diagnosis for new parents.
So believes Caroline Lafferty from Killybegs in Co. Donegal, who is mum to eight-year-old Jamie, who has Spina Bifida and Hydrocephalus. With her husband Stephen, they undertake as much awareness raising as possible in their area.
“Spina Bifida and Hydrocephalus are no longer unknown words in my area. Everyone knows that there is a boy (Jamie) who has Spina Bifida and it is not the end of the world as he is a happy wee man, living his own life,” says Caroline.
“It would have been nice to have known this when we found out that Jamie had Spina Bifida and Hydrocephalus, that while, yes, he will always have these conditions, he can get on with life.
“Raising awareness will also help to educate the public over the conditions. After we received Jamie’s diagnosis, people were saying to us: ‘I know someone who had that (Spina Bifida) and I think they passed away,” says Caroline.
“Then it would come to light that the person they were talking about had another condition altogether. People always spoke with good intentions but it was not helpful.”
Jamie attends Dunkineely National School near Killybegs where he is now in second class and is getting on very well. He has the assistance of an SNA and keeps his Crocodile Walker in school during the week to help him when he is playing in the yard – however, he rarely uses it at home.
When Caroline was 32 weeks pregnant, a scan in Letterkenny Hospital showed that something was wrong. However, medical staff there were unable to make a diagnosis and Caroline and Stephen were referred to Holles Street Hospital in Dublin.
“We had to wait four to five days for that appointment which was horrendous as we had no idea what was wrong at that point – I wondered was I going to have a baby at all.
“Holles Street confirmed that Jamie had Spina Bifida but they were more concerned about the Hydrocephalus at that point as they said it was quite severe. They said things like: ‘not enough brain matter’, intellectual and cognitive impairment,’” recalls Caroline.
“I did not know what to think; I could not even say the word Hydrocephalus at the time. It was all like mumbo jumbo.”
The plan agreed with Holles Street was for Caroline to go home to Donegal and to come back in four weeks’ time for another scan and then a delivery date would be decided.
“I went home and tried to stay off the internet! It was a scary time. Then I went into labour early and I had Jamie in Letterkenny Hospital.
“It was a really positive birthing experience. I had four weeks’ lead in time to it; I had been prepared to give birth to a baby with Spina Bifida and Hydrocephalus,” says Caroline.
“There was no sadness involved and it was a relief to finally meet this little person. In the clinic in Holles Street when we went for the scan to confirm the diagnosis, we thought we were in the ‘bad news scan’ clinic as everyone there had tissues and were upset.
“When they told us the diagnosis, it was very matter of fact and run of the mill. In Letterkenny Hospital, maybe because it was in the country, everyone was ready, prepared, and waiting for me when I went in to give birth.
“It was not run of the mill and it was a very positive experience for us.”
A few hours after Jamie was born, he was transported by ambulance to Our Lady’s Hospital for Sick Children in Crumlin with Stephen and his brother following by car. The following day, Jamie had surgery to have his back closed and Caroline was able to get to Dublin shortly after he came out of surgery.
“It was a rollercoaster, my head was all over the place but I can still remember the huge sense of relief and that the massive worry was no longer there,” she says.
“The huge concern over the Hydrocephalus was not there in Crumlin. I thought they should be moving quickly to put in a shunt but they said they would wait and see. Six days later, they sent us home to Donegal with no shunt and eight years later, Jamie still does not have a shunt.”
Caroline and Stephen always questioned the doctors if Jamie would ever walk but none would be drawn until one doctor said: ‘Oh, I won’t see you back here until he is up on his feet’.
Between the Spina Bifida and having Hydrocephalus, Jamie struggled with his balance and meeting his developmental milestones but he eventually reached them all.
“Jamie is very much his own man and his own character,” says Caroline.
“Maybe I have the same worries as any parent but I worry about him completing his education; I worry about the potential disappointments and his long term health issues and mobility.
“I worry about him developing scoliosis. The Hydrocephalus will never go away and I worry about him needing a shunt at some stage as he does get headaches.
“He appears quite well and he is quite well, but he is still affected by Spina Bifida and Hydrocephalus.”
The advice Caroline would give to parents who are about to have or have just given birth to a child with Spina Bifida and/or Hydrocephalus is that it is not necessarily something to be afraid of.
“We were very much afraid for a long time. I think that Jamie was two-and-a-half before I dropped the absolute dread sitting on my chest about what would happen next,” she says.
“Yes, there are a lot of appointments, checking and monitoring, and everything has to be planned, and you have to be very organised – you cannot do things spontaneously. But it is not something to be afraid of.”
The strength you gain to deal with your child’s condition comes, says Caroline, not from your doctors, family or friends but from other parents of children with Spina Bifida and/or Hydrocephalus.
“The strength comes from people who have been where you are. A lot of people want to be helpful and be there for you, but unless they have your perspective, it is not the same,” she says.
“I would advise parents who have a child with one or both of the conditions to reach out to others in a similar situation for support and strength.”
Just like any other five-and-half-year-old boy, Luca Keogh is chatty, inquisitive, and full of playful fun. However, unlike most other young children, he possesses all these positive attributes, despite undergoing 15 brain surgeries and 23 general anaesthetics in his short life.
Luca, from Newtownmountkennedy in Co. Wicklow, has Spina Bifida and Hydrocephalus. His parents, David and Sarah were told that their son would never sit up on his own or walk, yet, he has defied these predictions and done both.
“Luca copes really well, he loves being in Temple Street Hospital and bounces back really well from surgery,” says Sarah.
“He has spent nearly 100 nights in Temple Street, he knows all the staff, there and he has his buddies. He loves the play room: he gets very excited to go to Temple Street, it is just normal to him.
“But he does not like the ‘smelly gas’ (general anaesthetic). He was the first child in Ireland to have the surgery he underwent in February. All these surgeries are not fun but Luca takes it in his stride, he is a very upbeat child.”
Sarah is Youth Officer with the Wicklow Branch of SBHI, where she is an active member involved in all of the plans and activities of the group.
Three years ago, Sarah started to bring Luca to Co. Limerick for intensive physiotherapy. While it is difficult to be away from home for three weeks at a time, four times a year, Sarah says that it is made easier by due to the progress Luca has made, the fact that she home schools her eight-year-old daughter Freya, and that they generally travel to Limerick with friends from SBHI.
“The therapy is the kind of programme which is in use in the USA and Poland, doing things such as sit ups, press ups and weights,” explains Sarah.
“The physio itself is not expensive but when it is two hours per day for three weeks and your accommodation as well, it does add up. But, there are so many benefits from it, it is well worth it.
“Luca could not sit up on his own – he had no muscle - but after three weeks of physio, at two years of age, he was sitting on his own.
“It was amazing. He went from lying to sitting in three weeks. Luca built up muscle and once he realised he could move that was the end of that! He was crawling, then walking and he was told he would never do any of those things.”
In the summer of 2015, Sarah says that Luca was walking very well, however, due to having had six brain surgeries in the course of one year, he is mainly using his wheelchair at the moment.
As he has Slit Ventricle Syndrome, Luca has a lot of issues with his shunts. The shunts underdrain at night, causing pressure spikes and disturbed sleep, leaving Luca very tired during the day.
“No one in Ireland has had a Miethke Valve – a programmable shunt – yet. But that is what I would like for Luca as it would allow pressure settings to be changed without the need for surgery,” says Sarah.
“Luca’s next surgery will be his 24th and I really do not want any more surgeries after that.”
Sarah is fulsome in her praise of the helpful supports she receives from other parents, the Wicklow Branch, and from SBHI.
“There is a really active parents’ group on Facebook. It is like a lovely community of help and support with things like hospital visits and any questions you might have,” she says.
“SBHI has been good to us and Luca: the Wicklow Branch has summer and Christmas parties and the SBHI conferences are also really good.”
When first time expectant mother Amanda Reeves received the diagnosis at 20 weeks pregnant that her baby girl, Alyssa, would have Spina Bifida and Hydrocephalus, she cried her eyes out for days.
It felt, naturally, like a shock, particularly as Amanda and her husband Keith had been trying to become parents for four years. In fact, the wonderful news that she was pregnant, came just two weeks before they were due to go ahead with IVF treatment.
“Due to a thyroid problem, I was at a high risk of miscarriage but I was delighted that all was going well, that is until we received the diagnosis of Spina Bifida and Hydrocephalus,” says Amanda, who lives in Clane, Co. Kildare.
“I had done everything right. I had followed all the medical advice. I was even taking Folic acid for the four years I was trying to get pregnant - I really hate it when people ask me was I not taking folic acid.”
Once the shock of the Spina Bifida and Hydrocephalus diagnosis wore off, Amanda stopped crying and her strong coping skills kicked in. As she had no idea about both conditions, she began researching Spina Bifida and Hydrocephalus and discovered Spina Bifida Hydrocephalus Ireland (SBHI).
“I really believe that knowledge is power. There are a lot of big medical words used and when the doctors say them, if you do not know them, they throw you. When you understand the words, it is not as scary,” says Amanda.
“I tried to find out as much as I could; I got in touch with SBHI’s Family Support Team and I joined the Parents’ group on Facebook and got great support from them,” says Amanda.
“I was scanned every month, I met the neurosurgeon in Temple Street to have an idea of what to expect, so I think I prepared myself.
“Having the diagnosis beforehand was very good as it allowed me time. Some parents of Spina Bifida and/or Hydrocephalus babies who only find out after the birth, find it a little bit harder.
“I was able to plan and prepare for my maternity and I knew exactly what would happen. I found out everything about EVD, the lesion, how long Alyssa would be in hospital, catheterisation, etc.
“I had myself mentally prepared. Everyone was expecting me to breakdown and be a mess but it was what I expected, so I was okay with it,” she says.
“I knew Alyssa was going to be taken away from me to have surgery and the staff in the Rotunda were just brilliant; they sent a nurse in a taxi with me to Temple Street and I had a half hour visit with Alyssa before she went in for her surgery.
“They came with me by taxi the next day as well and by day three, they said I was well enough to take the taxi to Temple Street by myself.
“I think it is all harder on the Dads when the child is born. I was in the Rotunda just after an emergency section and Alyssa was in Temple Street. So, who did Keith go to? He was over and back between the two hospitals and he had loads of paperwork to do. It was really very stressful and I do not know how he did it.
“My mum, Divina - who lives around the corner from me - and sister, Jennifer have been a huge support, I would be lost without them, they have been hands on, learning about the shunt, and catheterisation. I had great supports from the beginning from the Facebook page, SBHI, and the Kildare branch.”
Alyssa arrived 10 days early, eight-and-a-half months ago, by emergency caesarean section in the Rotunda Hospital. She was born at 5.30pm and by 8.30pm she was in Temple Street Hospital and she had her spinal closure surgery carried out the following day.
“She had an EVD measuring the fluid on her brain but we were sent home without shunt surgery. A week later we were back in hospital as her wound opened and she had to be re-stitched,” says Amanda.
“At eight weeks, Alyssa had to have shunt surgery as her head had grown massively and she was having seizures. She has been doing great since the shunt surgery.
“I bring her swimming twice a week, to Waterbabies and the Enable pool in Naas.
At the start she was not moving her legs in the water, but she is now starting to move her legs and feet. The doctors reckon she will walk but they never really know.”
Like all parents, Amanda worries about her child’s future and she knows that Alyssa’s conditions will bring problems.
“I do worry about things like will she walk? Then if she walks, will she break bones? Will she be bullied? The shunt is another worry because at any point it could go,” she says.
However, Amanda’s positive outlook means she is envisioning a future for Alyssa where she has no serious health problems and she attends a mainstream school.
Does the Reeves story resonate with you? What has your experience taught you? Feel free to add your story here as part of Awareness Week
The aim of World Spina Bifida and Hydrocephalus Day (Tuesday, 25th October 2016) is to raise awareness and understanding, and to advocate and promote the rights of persons with these conditions.
SBHI is celebrating World Spina Bifida and Hydrocephalus awareness, not just for one day, but for a whole week.
For each of the seven days of SBHI's Spina Bifida and Hydrocephalus Awareness Week (Monday to Sunday, 24th to 30th October), we will publish a member’s story on our website (www.sbhi.ie/aw2016). Then on Facebook and Twitter, we will encourage you to both read the member’s story, and to share your story as well.
Seven of our members and their parents, of all ages, from babies to young children, from teenagers to young and mature adults, have graciously and generously shared their experiences of adversity, strength, courage, and determination.
They are doing so in the hope that the shared human experience of their lives will help to educate the public about the conditions and to show other members that you are not alone - that we are united, as one community, by Spina Bifida and Hydrocephalus.
One, or all, of the seven stories being shared by our members may resonate with you and your life now, or how it was when you were their age. If you like and connect with the SBHI Awareness Week stories, we encourage you to share them, and to share your experiences, using the hashtag: #WhatsYourStory?
Are you all ready to take part in SBHI Awareness Week? Great! So what will be your story? Get ready to share and don’t forget to use the hashtag: #WhatsYourStory?
Other hashtags you can use include: #SpinaBifida #Hydrocephalus #sbhi #unityindiversity
Minister of State for Disability Issues, Finian McGrath, TD has confirmed that he will be honouring the members of Spina Bifida Hydrocephalus Ireland by attending our annual conference in Athlone next month.
Minister McGrath will be joining the conference in the Sheraton Hotel at 1pm on Saturday, 15th October to have lunch with all attendees before addressing the conference at 2pm.
The Minister, who is very keen to talk to members attending the conference, will also take part in Dr Trudi Edington’s afternoon session.
This year’s SBHI Annual Conference on the theme ‘A Mind of My Own’ is running from Friday to Sunday, 14th to 16th October.
For members interested in attending there are still a number of places available with options for weekend packages with accommodation, meals and entrance to workshops included.
However, bookings must be made by tomorrow, Wednesday (28th September) through SBHI only by phoning 01 4572329.
Funding for campaign to challenge Irish society’s perceptions of disability
Spina Bifida Hydrocephalus Ireland (SBHI) has been granted funding to undertake a ground-breaking visual campaign to challenge the way people living with disabilities, and Spina Bifida and Hydrocephalus especially, are perceived by Irish society at large.
A total of €8,000 is to be made available to SBHI from the Department of Justice and Equality’s Disability Awareness Initiatives Fund for the ‘ENABLE:ABILITY’ project to produce a top quality commissioned short film.
This film will communicate the ‘ENABLE:ABILITY’ message with striking effect and deliver a lasting message in terms of how wider society can often understand and ascribe negative language and attitudes to people living with disabilities.
Through also raising awareness as to the prevalence of Spina Bifida and Hydrocephalus in Ireland today, the film will demonstrate the ways in which societal attitudes towards those living with disabilities are in fact powerfully disabling themselves.
With a positive outlook, the film will communicate the way in which people living with Spina Bifida and Hydrocephalus lead fulfilled lives, and even more so when supported by enabling attitudes from a truly progressive, equality driven society.
The project will be a catalyst to get Ireland talking about often ignored subjects, and will highlight what a transformative difference people can make when approaching the realities of disability with a positive approach.
The ‘ENABLE:ABILITY’ project will also encourage the submission of stories to a bespoke website. The accounts from real people from within the SBHI membership who truly know the power of disabling attitudes, and will ensure that this is a campaign genuinely driven by those experiencing marginalisation due to their condition.
“This is a significant piece of project funding which allows SBHI to campaign on key issues faced by our members every day,” commented SBHI CEO, Tom Scott.
“The fact that the National Disability Authority has approved this project is a great endorsement of where SBHI is positioning itself for the future and we look forward to realising real change for everyone affected by Spina Bifida and Hydrocephalus through the ENABLE:ABILITY project.”
The benefits of the campaign – ‘ENABLE:ABILITY’ will give a group of people, who for far too long have existed without a voice, a platform from which they can deliver their messages about what life is really like when living with a disability.
The script for the film, which is receiving this essential funding aid, will be written as part of a facilitated group workshop with SBHI members and any other interested parties.
SBHI CEO, Tom Scott will be with workshop facilitator and the SBHI Family Support Workers, Youth and Respite team, and Education Development Co-ordinator will also be involved so that their direct experience can be drawn upon and utilised.
Notes to Editor
Spina Bifida Facts
- With around 40 babies born with Spina Bifida each year in Ireland, we have one of the highest incidence rates in the world.
- Spina Bifida is the most common neural tube defect (NTD) which causes incomplete development of the spinal cord.
- Translated, ‘Spina Bifida’ literally means 'split spine'.
- Spina Bifida causes significant mobility issues, continence problems, pressure sores, and social challenges of isolation and loneliness.
- 1 in 1,000 pregnancies are affected by Hydrocephalus each year.
- Hydrocephalus can also develop later in life as a result of head impact injuries.
- Hydrocephalus is a condition where too much cerebrospinal fluid builds pressure in the brain, this is usually relieved by a shunt (a rubber tube) which is fitted internally to drain the fluid away into the stomach, or sometime the heart.
- Hydrocephalus is often referred to as a hidden disability due to the lack of obvious physical signs in most cases.
- Common issues arising from Hydrocephalus include: intellectual difficulties, behavioural problems, memory issues, and challenges to cognitive processing.
Spina Bifida and Hydrocephalus
- Spina Bifida and Hydrocephalus are life-long conditions and although there is no ‘cure’, there are many ways in which those living with Spina Bifida and/or Hydrocephalus are enabled to overcome challenges.
- It is common for both conditions to be experienced at the same time from birth.
- Spina Bifida Hydrocephalus Ireland (SBHI) is a national organisation supporting more than 2,000 people who know Spina Bifida and/or Hydrocephalus to be a reality in their lives.
- SBHI works to increase awareness about Spina Bifida and Hydrocephalus, as well as the essential funds which ensure that our unique service is sustained.
- We deliver unique services through our team of: Family Support Workers, a Youth and Respite Team, our Education Training work, and through our Resource Centre in Clonshaugh. Together these teams ensure that everybody affected receives the best support available to them as they seek to live fulfilled lives.
To find out more about SBHI, the conditions we work with, and how to get involved, please see: www.sbhi.ie
Gerry Maguire has been appointed Special Advisor to Minister for Disabilities Finian McGrath T.D.
Gerry has gained a wealth of experience over his 35 years working in the Department of Health and will advise Minister McGrath on policy matters across his Ministerial portfolios of Health, Social Protection and Justice. In addition, Gerry has a broad knowledge of the disability sector in Ireland and has also volunteered extensively with Spina Bifida Hydrocephalus Ireland (SBHI) and was instrumental in the establishment of SBHI’s Peer Support Service.
Gerry has written a book titled “Walk Away and Forget Him” in which he details his experiences of living with a serious physical disability.
National Spina Bifida and Hydrocephalus charity receives €13,000 grant from the Hospital Saturday Fund
The national charity, Spina Bifida Hydrocephalus Ireland (SBHI), has successfully received €13,000 to conduct a research project which aims to document and further understand the most prominent issues facing those living with Spina Bifida and/or Hydrocephalus in contemporary Ireland.
The project application, entitled Spina Bifida and Hydrocephalus in Ireland Today, was submitted to the Hospital Saturday Fund (HSF), the charitable arm of the HSF Health Plan, and SBHI requested the maximum amount available. News of the successful application came in June, with the cheque officially presented on Tuesday 2nd August.
Commenting on the achievement, SBHI CEO, Tom Scott, said:
‘This is a wonderful opportunity to garner up to date information regarding the health issues facing the Spina Bifida Hydrocephalus community across Ireland. It is easy to think of health in a very narrow way, however optimum health leads to a whole host of potential benefits.
‘Each day SBHI staff and volunteers seek to enable our members and service-users to overcome challenges such as isolation, regional disparities in accessing key services, access to education, and mental health related issues. Many of these issues are rooted in the personal health of the individual concerned. This project will give us comprehensive information from which SBHI can target our strategic, campaigning, lobbying, and funding energies to make a genuine, long-term difference.’
As the new strategic plan for SBHI is drafted, the information from this project will enhance the relevance of the long-term vision for the organisation, ensuring that the small but highly motivated team of staff and volunteers are guaranteeing the most valuable service possible for all those living with Spina Bifida and/or Hydrocephalus across Ireland.
Spina Bifida and Hydrocephalus in Ireland Today will be launched online and in printed format during Autumn 2016.
Pictured during the official cheque presentation on Tuesday 2nd August at the SBHI National Resource Centre, Clondalkin, Dublin, were (left to right):
- David Thomas, Trustee, HSF
- Helen Riney, SBHI Youth and Respite Coordinator
- Tom Scott, CEO, SBHI
- Daniel Riordan, SBHI Volunteer
- Paul Jackson, CEO, HSF
For more information, please contact:
Tom Scott, CEO – 01 457 2329 / email@example.com
Spina Bifida Hydrocephalus Ireland (SBHI) – www.sbhi.ie
Hospital Saturday Fund (HSF) – www.hospitalsaturdayfund.org
The following post is a response from Spina Bifida Hydrocephalus Ireland (SBHI) regarding a Facebook survey about Folic Acid which was posted by Safefood on Monday 30th May 2016.
The survey, which is a ‘baseline survey’ to establish perceptions about Folic Acid ahead of a more significant campaign, included a sentence which was insensitively written and offensive in nature. This sentence was presented as a ‘true or false’ question and has since been removed.
Safefood became aware of this mistake on Monday evening and at 10pm the survey was amended. An apology was made in the comments section, and a further statement of apology was added to the Safefood Facebook page the following morning (Tuesday 31st May).
SBHI were made aware of the survey and the offensive sentence on Tuesday morning and Tom Scott, CEO, contacted Safefood immediately to find out how such an error could have been made.
Safefood acknowledge without reservation that this was an oversight, Safefood staff should have spotted it and removed it before it was published.
Though SBHI does work with Safefood in order to coordinate effective campaigning tools, SBHI did not see this survey before it was published and this process will be reviewed in future meetings between the two parties to ensure that the content is relevant, sensitively written, and appropriate to the intended audience.
SBHI does advocate that when taken in the correct dosage and at the right time, Folic Acid can help to prevent Spina Bifida in up to 70% of cases. The organisation is very aware of the sensitive nature of this topic and the need for the message to be clear, especially regarding pregnancies where the correct dosage was taken at the right time and Spina Bifida still developed in the growing baby.
The organisation works on a much wider level to support the thousands of people living with Spina Bifida (and/or Hydrocephalus) throughout their lives, and the lives of the families, carers, friends, and professionals who form the SBH community in Ireland. To this end SBHI believes in a society which promotes equality and as such will address any instances where inappropriate language is used in reference to Spina Bifida and/or Hydrocephalus.
Moving forward, and arising from previous planning meetings between SBHI and Safefood, there is recognition that future campaigns need to be shaped with far more input from people who know Spina Bifida to be a reality in their lives.
If you would like to be a part of this process and help shape the future of Folic Acid campaigns in Ireland, please contact:
Aileen McGloin - Comms Manager, Digital & Health, Marketing & Comms
To offer further feedback to SBHI on this or any other related issues, please contact Tom Scott, CEO: firstname.lastname@example.org