Thanks to the continuous advances in medicine, healthcare services have been drastically improved for children with Spina Bifida in many countries. However, once these children become young adults, the access to a comprehensive healthcare service becomes very fragmented and they no longer have the “one-stop-shopping” alternative for a multidisciplinary care. Besides, the transition from childhood into young adulthood is a delicate period for most teens but for teens with Spina Bifida, the challenge can be even greater as they evolve from:
- Children to adults with specific needs
- Pediatric care to adult health care
- School environment to work sphere
- Family life to independent life
- Home to community living
The International Federation for Spina Bifida and Hydrocephalus advocates for a comprehensive healthcare system throughout the lifespan of people with Spina Bifida. Moreover, IF suggests that adolescents with Spina Bifida and their families should prepare for the transition very early in the childhood phase, although this may vary depending on the child’s cognitive and physical capacities and their family supports. The transition itself should be steady and flexible. The child’s multidisciplinary care team may aid in the process by preparing comprehensive, up-to-date documents detailing the required medical care, including information about medications, surgery, therapies, and recommendations. Families and parents have a big role in insuring a good transition process. A bigger dependence on others (mainly parents) may hinder the adolescent's self-management of health-related activities, such as catheterization, bowel management, and taking medications. As part of the transition process, it is crucial to let the child/adolescent to manage his daily tasks by his/her own. It is also beneficial to begin discussions at an early age about educational and vocational goals, independent living, and community involvement.
In September 2011, IF organised a workshop on access to multidisciplinary care for adults with Spina Bifida. You can access the presentations in this page.
I am pregnant with a child with Spina Bifida or Hydrocephalus.
What now? Why me?
Confusing feelings and emotions when you hear the news that your baby has Spina Bifida or Hydrocephalus. It is important to take some time and think and talk about what you feel. Other parents wrote down what they think, which is important when hearing this news.
Being pregnant with a child with Spina Bifida and Hydrocephalus
- I am pregnant with a child with Spina Bifida and/or Hydrocephalus. The child I am expecting has a disability, what now?
- Take time to think. You are shocked and may feel desperate. This is normal and it will take time to adapt to this new situation. You need not panic - there is time for you and your partner to look carefully at this. You need time for yourself, for your partner and for the baby who will be different in some ways. Your baby in its mother's womb is in the best environment it can be. Your child has no pain. You have time to make unhurried, unpreserved and informed decisions.
- So much emotion, such confused thoughts
- Talk about what has happened to you. Like all parents you looked forward to a normal healthy, baby. You did not expect the information you have just received.. As parents, it is important to express your feelings to each other. Later, talk to close friends and family. This is perhaps one of the most difficult moments of your life. So accept all help you can get. If you find it impossible to discuss these things a counsellor will assist you.
Both partners should be together to hear the information and medical advice given. Remember, medical advice is important, but should be balanced with all other factors. Doctors will explain the medical factors of your child's condition. but there are other sources of information. Try to receive this information as a couple. It is easier if both partners hear and share all information. Together you hear more . The stark medical information is can be alarming and may need repeating several times before you really understand all that is being said and you need time to absorb this information.. Even in today's technical age, it is difficult for doctors to assess accurately the severity of disability of your child even if they are specialists in the condition. Some gynaecologist are very negative when assessing the quality of life for those with Spina Bifida and Hydrocephalus. This is a pity because most gynaecologists lack practical experience of these conditions. Therefore it is good to have more sources than your gynaecologist. Internet is useful for basic information. But you should also contact the parent organisation of your region ,or a consultation with Spina Bifida team will help you.
Why me, why us, why our child?
This is usually the first reaction of most people. It is not your fault. It is difficult to accept that you and not another are the one or two in a thousand parents who are faced with this. Scientific research shows that many factors contribute to the development of Spina Bifida and Hydrocephalus. It is important to remember that it is not your fault. It was not your diet or any accident that you had that caused child's disability. Spina Bifida can occur even in ideal situations. What we do know is that taking folic acid before conception and into the third month of pregnancy can reduce the possibility of Spina Bifida by 75%.
What can you do to improve your child's situation?
There is a lot you can do, but one of the most important things it to take time and to speak about your feelings. The following is a list of some of the things you can do:
- Continue the healthy lifestyle as you had from the beginning of pregnancy. Smoking and abuse of alcohol is bad for all children also when they have a disability.
- Accept that the unborn child is yours. It is the same child that you loved before the diagnosis. The only difference is the information you have received. You love your child and this love will help you and your child in many ways.
- Make an appointment with specialist advisors who can provide up-to-date information about Spina Bifida and Hydrocephalus. Treatment has improved dramatically over the last decade and this will influence the prognosis.
- Ask to meet other parents who have a child with Spina Bifida and Hydrocephalus. They can talk to you about how they cope and live with the problems which may arise.
- In most cases the ideal situation for your child is to have a full and complete pregnancy. Your child is safe within you.
- Usually, treatment will start immediately following the birth. This will involve closure of the back and often also treatment of the Hydrocephalus. Choice of consultant, preferably a skilled neurosurgeon, is important. Ideally, choose a hospital with a specialist Spina Bifida and Hydrocephalus team for the delivery, so that mother and child will not be separated. If this is not possible the expertise of a skilled (neuro-)surgeon is important as this can prevent many problems and may reduce the level of paralysis.
- Read everything you can find about Spina Bifida and Hydrocephalus and inform grandparents and your friends about your special child.
- You will find information on the web about a new technique where surgery can be carried out on the unborn child in the womb. There is a risk for the mother as well for the unborn child and sometimes the results can be disappointing.
Some doctors will propose an abortion or a termination of pregnancy.
Some doctors judge that people with Spina Bifida and Hydrocephalus have a very poor quality of life which may not be worth living. This is a narrow, medically-aligned view which disregards other viewpoints. Indeed, there are many medical problems related to Spina Bifida and Hydrocephalus, but quality of life is not only a medical matter. Those best qualified to judge -people with Spina Bifida and Hydrocephalus- are convinced that their lives are definitely worthwhile. Adults with Spina Bifida and hydrocepehalus who are talking below about their lives, were born at times when medical care was not as effective as it is in today's times.
The International Federation for Spina Bifida and Hydrocephalus (IF) is the world-wide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus organisations. It was created in 1979 by national organisations of people with these impairments and their parents. Today IF's membership consists of 40 regional and national umbrella organisations for Spina Bifida and Hydrocephalus. Further, IF has an intensive contact with regional and national organizations in over 50 countries, spread over five continents.
IF's activities are focused on the dissemination of information and expertise throughout the world to families, individuals, professionals and volunteers involved in the field of Hydrocephalus and Spina Bifida.
In industrialised countries the coming together of parents and adults with Spina Bifida and Hydrocephalus in national organisations was a significant step towards improvement of services. These organisations have lobbied for and assisted in the establishment of better services for people and for their families who are now increasingly able to lead lives close to 'normal'.
In developing countries however, many survive, but in conditions which for the individual and its family vary from appalling to inhuman. While national organisations will specifically focus on service delivery in their own countries, IF looks across borders and facilitates the creation and strengthening of activities of national organisations in those countries where services are still poor or non-existent.
In some of these countries IF has encouraged parents and other people involved to come together and work out a strategy, which has resulted in the formation of local organisations and IF projects for early detection, treatment and rehabilitation. These projects show solidarity between the North and the South.
IF has contacts with national associations for spina bifida and/or hydrocephalus in more than 40 countries. IF stimulates and supports the creation of new groups and national associations.
IF developed a basic manual on how to set up a support group.