Summary report

19th INTERNATIONAL CONFERENCE ON SPINA BIFIDA AND HYDROCEPHALUS, LISBON, 6-9th June, 2008

THEME : Drawing Smiles Towards Adulthood

This year’s conference mainly focused on improving the quality aspects of life for people with Spina Bifida and Hydrocephalus.

However, prevention is better than cure… Mr. Andrew Russell, Chief Executive of ASBAH, emphasized the importance of Folic Acid Fortification of flour. Although plenty of evidence has already been furnished that this is an effective, sustainable and cost-effective intervention to eliminate folate insufficiencies, the Government still demands more proof! The Campaign for Compulsory Fortification with Folic Acid aims to encourage the awareness and knowledge of Folic Acid, in particular to Governments. Yet, there is still a long way to go.

The key-word, ’Smiling’, ran through the conference like a continuous thread. According to Pierre Mertens, IF President, people with Spina Bifida have different, but warmer and deeper smiles. Besides, unhappiness has nothing to do with having a disability or not and you must not reduce a person with Spina Bifida only to his/her disability.

The IF Award was handed over to T.H. Rob De Jong, in recognition of his special contribution to Spina Bifida and Hydrocephalus.

This neurosurgeon helped countering the major argument of The Groningen Protocol, which states that babies with Spina Bifida are suffering unbearably and have no quality of life. He developed the basics of the point of view that babies with Spina Bifida do not suffer unbearably and do have a sufficiently independent life. Besides, ‘unbearable and hopeless suffering’ are very subjective experiences. Presenting the consequences of Spina Bifida in such a negative way, creates an incorrect and narrow-minded image of this neural tube defect. As a result, many parents themselves request for life-termination !

(Eli Skattebu hands over the IF Award 2008 to Dr Rob de Jong)

Dr. Kachinga Sichizya, a very committed Zambian neurosurgeon, raised the burden of Hydrocephalus in Resource-Poor Countries. Some of the causes are structural abnormalities, obstructing mass, infection and prematurity. Diagnosis is based on some clinical signs and symptoms, such as accelerated head growth. The strategy of the future is training neurosurgeons and their staff in developing ETV/CPC treatments and equipping their hospital.

The IF President emphasized that “Knowledge is the key to a better life”. IF is a unique, worldwide Network with a treasure of knowledge and aspects of Hydrocephalus and Spina Bifida. It is called the IF Knowledge Network, a user driven quality controlled information database. IF coordinator, Lieven Bauwens, explained its functioning and goal to gather all available and dispersed information on both defects.

The key-theme ‘Drawing Smiles’, was treated by Mrs. Alice Rajaratnam from Ireland.
Maintaining a smile in all aspects of life during the transition from childhood to adulthood, is not evident. During the teenagers’ development, early intervention is essential when the handicap becomes significant. They must also be well-equipped with as many skills as possible, attain a good self-image, self-confidence and independence. Besides, the intended goals should be realistic and attainable. In adulthood there may be lack of appropriate social skills and learning problems. Very common things like good music, having achieved something, social outings, being loved, … may make them smile .

Mr. D. Morrissey advocated for the Need of Transition Services for Youth with Spina Bifida.
Recommendation of specific policy changes to facilitate successful transition to adulthood implies the integration of youngsters into the planning process.

Humour, art and sports, music, performance and smiling too highly contribute to the social and mental development of the disabled.
An admirable example was brought by the “Dancing with a difference’-group, under the leadership of Mr. Henrique Amoedo. People with disabilities were confronted with reality by presenting themselves, aiming to upgrade the sense of their own dignity.
Soon, they were no longer a ‘different’ group, but part of a coherent group of people who all have their specific differences. However, as human beings we all have equal, human values! Wordless dancers whose expressive faces and gestures spoke for themselves. An exceptional performance, thanks to and not despite of their body and differences…

The effect of humour on people with a disability was made obvious by Beatriz Quintela, a member of the Association Red Nose Intervention.
All human beings are emotionally the same, for we all have the same feelings. The hospital is a frightening place where you don’t want to be. So, clowns are at their place here to help the children, by making them laugh in order to transform them from ‘patients’ into ‘human beings

During the academic sessions, many experts shared their highly qualified, up-to-date knowledge and experiences concerning their specific speciality. The audience was involved through interaction, workshops and animated panel-discussions, in order to take away all the barriers of difference. In this way, both the experts (observers of a disability) and the target-group (affected by a disability), exchanged Spina Bifida-related visions on an equal level!

The question whether the Knowledge and Progress concerning the quality of life of people with Spina Bifida and Hydrocephalus had improved, resulted in the following conclusions : Although there is a progress on the professional level, we must continue looking for further steps for a better life for these people!

Despite of the impossibility to mention all the speakers and topics, we owe many thanks and appreciation to all the speakers, performers and the IF Board for their contributions and, last but not least, to our Portuguese friends for the perfect organization and hosting.

During the side-activities we got the opportunity to socialize, (re)fraternize, exchange views,.. From the beginning, the differences between the ‘fit’ and ‘unfit’ people disappeared like snow in the sun. On the contrary, we even caught the same, but harmless Smile-Virus! Here, we were all equal ‘human’ beings with equal aims and needs, melting together to One Big Family where everybody felt accepted, appreciated and respected. The more we got acquainted, the more we recognized more similarities than differences!

Final conclusion : The combination of acquiring Knowledge and Having Fun was an enriching experience! This memorable Conference was characterized by collaboration, affection, laughter, harmony, spontaneity, enthusiasm, helpfulness, new knowledge and contacts…. Words failed to describe the overwhelming atmosphere. I’m convinced many of us will look back upon it as the ‘Smile-Conference’!
Recalling to mind these impressions, thoughts and musings, I often couldn’t suppress a smile. In the same strain, I would like to finish this report with the following wish : ‘May the future smile on you!’

Annie Van Tienen, IF volunteer

Kids Camp

The SBA conference is a family conference. Whole families turn attending the conference into their annual family holiday. Even teens, children, brothers and sisters… attend. This hotel offers a whole range of recreation activities.

Day 3 @ the conference

Day 3 started off with a session with parents, led by Dr. Tim Brei and Dr. Lynda Mulhauser. This was a session with parents of adults with Spina Bifida aged 18 and up. The oldest “child” was 58!! Major issues that came up in the discussion were: education, employment and driving a car.

(parents’ chat)

I left the session halfway to attend the session where brothers and sisters would speak out. This session drew my attention because I am a brother to a young man with Spina Bifida. Siblings have a special role in a family with a child with special needs. A lot of the attention of the parents goes (rightfully) to the child with Spina Bifida. The siblings, all aged 13 to 19, formed a panel for a public of parents. A lot of interesting questions cqme from the parents. Brothers and sisters were very honest about all issues of having a sibling with a disability, but they were equally outspoken on the positive elements. All were extremely proud of their brother or sister with Spina Bifida.

(panel of brothers and sisters)

The celebration luncheon celebrated 35 years of SBA. The organisation awarded scholarships to outstanding youth with Spina Bifida. Several awards were handed over to outstanding members of SBA and outstanding individuals.

The last session of the day was an update of the genetic and environmental study of Neural Tube Defects at the Center for Human Genetics at Duke University Medical Center. Dr Debbie Siegel presented what is currently understood about potential genetic causes. They are still looking for families with at least one person with Spina Bifida to make this study more complete. Check here or call +1-866-385-3683 (toll free).

Day 2 @ the conference

Today was quite an intensive day, starting off with an interesting and interactive session led by Shubra -Sue- Mukherjee on transition and preparing the transfer to adult care. Sue and her colleagues Rebecca Boudos and Zaida Torres, working at the Children’s Memorial Hospital worked directly with the audience on how to prepare the transition, or better: the growing up of a child with Spina Bifida. She focussed on the development of the necessary skills and how to introduce that already early in life. Transition is a major topic during the conference.

(Dr. Sue Mukherjee, Mrs. Rebecca Boudos)

I was particularly looking forward to the second lecture. Dr. Adrian Sandler is the author of the book “Living with Spina Bifida” which can be considered a reliable guide (updated 2003). The Zimbabwan national is currently less involved with Spina Bifida as he has moved to a smaller town, but has yet a lot of experience to share. He gave a neutral overview of some alternative medicine practices people turn to and how Sensory Integration Dysfunction fits into this. This theory, developed primarily by Jean Ayres, neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). She has worked on therapies for the disorder. Dr. Sandler’s lecture evolved to an open discussion on the practice of these often unproven treatments and the comparison to placebo treatments.

(Dr. Adrian Sandler)

One of the most popular sessions, or should we say “three of the most popular sessions”, is the “ASK THE DOCTOR” session. This year, the topics were: urologic care, neurosurgery and orthopedics.

Thirdly, Dr. John Wiener gave an overview on the available treatments of neurogenic bladder. He focused on non-surgical treatment.

Last session of the day was by Julie Yindra, who also presented at the IF conference in Portugal, on the same topic, but three times as long. Mrs Yindra is a born motivator and a well known personality in the Spina Bifida Association. She works as director of disability services at the Greensboro college. Her presentation was on how to optimize the potential for independence through a personal action plan, based on the individual’s strengths and weaknesses.

Strategic Planning

SBA works a lot with its local chapters, which often are not that small. This session was targeted towards board members of those chapters, helping them to develop their own strategic plan and how to monitor it. Mrs Sheryl Paul (co-founder of Association Works, a Dallas-based consulting firm) guided the participants through 6 steps of the development of a plan, potholes and benefits. By sharing the mission and vision, all chapters work together as one large organization in the USA.

One of her interesting quotes:

If it ain’t broke, break it

(Mrs. Sheryl Paul)

Folic Acid: a wonder drug?

Dr. Russell Kirby reports, with the help of Julianne Collins, on some initiatives with regard to Folic Acid in several US states. They noticed that the incidence of Neural Tube Defects (NTDs) declined after the implementation of Folic Acid fortification in 1998, but that in recent years that decline has stabilized. One of the hypotheses during this session was that Folic Acid also reduces the severity of the Spina Bifida. Dr. Kirby also gave an overview of several policies or projects in different states. There is no harmonious approach. But combining the fortification with supplementation for specific target groups (women at child bearing age) seem to work very well.

(Prof. Dr. Russell Kirby, University of Alabama in Birmingham)

35th national SBA conference

I am grateful that I am allowed to attend this wonderful conference at this exceptional location. Surely, for a lone European visitor it is overwhelming. Tens of sessions attended by hundreds of people, organised along 5 different tracks make it very hard to choose (let’s do some math: I am only able to attend 1 of the 5 tracks, which means that 80% will go unreported…).

(conference programme at a glance)

Let them grow – a study

Mr David Morrissey presents a research on the need for transition services for youth with Spina Bifida. Health Care is just one of the many transition systems, which need a lot more coordination. Failure is not necessarily the fault of the youth or the family. We should be able to alter the system to successfully facilitate transition.

The study was conducted in the state of Arkansas in the USA, which has the opportunity to easily track youth with Spina Bifida and do the research on secondary conditions. Obesity is a serious problem due to mobility issues of youth with Spina Bifida. Social isolation in the rural state of Arkansas can be a considerable risk, and there can be difficulty to engage in a long term relationship. The respondents were asked to fill out an instrument to assess the risk of being depressed. Although it is not a diagnostic tool, 32 % of the children and over 50% of the adults are at risk of depression. When parents are asked to rate their children on independence, they do not rate their children as independent. Children, however, complain about the lack of support of their parents.

The study concludes with some recommendations to facilitate the transition and envisions a future for children and youth with a disability. When conducting the research, David came across some very promising initiatives, such as a coordinating nurse. The follow-up study will be presented during the next international conference.

Drawing Smiles, the lecture

Alice Rajaratnam is occupational therapist and manager of the resource center of the Dublin branch of the Irish Association for Spina Bifida and Hydrocephalus. She has extensive experience with growing children with Spina Bifida and Hydrocephalus. Independence is not only a set of learned skills, but an attitude which must be instilled in the child as early as possible. The three first years in life are crucial in the development of the child. Alice gave an overview from her 26 years of practice in counseling youngsters with Spina Bifida and Hydrocephalus on several developmental issues.

UN convention

Jon Burke, board member of IF and founding member of the UK adult group Your Voice, presents the UN Convention on the Rights of Persons with Disabilities and how this important convention can be used to improve the situation of people with a disability. This convention is of extreme importance for people with disabilities in general, and people with Spina Bifida in particular. This convention, when ratified by a particular country, asks initiatives from governments to develop legislation on anti-discrimination. For IF, the convention is an important advocacy tool, although it might be seen as technical and remote. Disabled people should be involved in all stages of the implementation.

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