In Dublin, I was looking for collaboration with the International Spinal Cord Society (ISCoS), a 6O-year-old umbrella organization for spinal injuries. ISCoS started after the Second World War for the many wounded with a spinal cord lesion. Over the years, they have expanded their target group to other spinal cord malformations such as spinal tuberculosis, cancer etc ... but spina bifida has never be included in their portfolio.
There are quite a few differences with the birth defect spina bifida, especially when there was no treatment for the hydrocephalus available. Before the invention of the shunt most of our children died or survived in institutions with inhumane large heads. Therefore, people who broke their spine in an accident did not want to be related to the very disabled survivors of spina bifida. Before their accident they were active citizens, now fighting for their dignity from a wheelchair and acquired incontinence.
In the City West Conference Centre, more than 700 participants gathered for the annual ISCoS conference. Primarily professionals, but also a considerable number of wheelchair users. The chairman, Belgian urologist dr. Wyndaele, advises me not to focus so much on spina bifida, because that could be wrongly received. "You better call it congenital spinal cord injuries than meningomyelocele. There is a desire at ISCoS to do more for children. But there are not so many children with a spinal cord lesion. Adults average would be 25 to 30 per million inhabitants a year, so about 200.000. "
The incidence of spina bifida is significantly higher. Calculated from a low incidence, we reach 350.000 pregnancies a year affected with spina bifida and we know that in the Global South, where there is no prenatal selection and lower levels of prevention, the incidence is much higher than in the Global North. Due to the improved medical care, children with spina bifida have survived in much better circumstances over the last 60 years. The differences in adult age with the spinal cord lesions are not so big anymore. On top of this, today, many adults make more and more use of the general rehabilitation centres serving spinal cord injuries. This because the spina bifida care is mainly organized by pediatric services which they cannot rely upon as adults .
In practice, the two target groups already come together. Some of our projects in Africa also support people with spinal cord injuries. To give an example, the nurses of the spinal cord unit in Gulu were trained by our nurses from Mbale. Ten years ago, when I was president of IF, I suggested that we include the spinal cord injuries in our associations. I believed that this could bring about a positive synergy for both target groups. People with Spina bifida opposed to this idea because they were afraid to be dominated by people injured after an accident.
So, all of this comes together. The meeting acknowledged that. "Adults with spina bifida fall between two chairs”, the pediatric services throw them off and we do not welcome them in our association," the ISCoS secretary said. There was great openness and ISCoS decided after my departure to go for it! 200.000 spinal cord injuries plus an estimated half a million newborns with spina bifida and a handful of opportunities to make a difference for them. It would a pity not to work closely together.