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.

Medical Advice
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 mission of the International Federation for Spina Bifida and Hydrocephalus is:

  • to improve the quality of life of people with Spina Bifida and Hydrocephalus and their families,
  • and to reduce the incidence of neural tube defects and Hydrocephalus by primary prevention;

by raising awareness, and through political advocacy, research, community building and human rights education.

IF Goals

IF goals

What is IF?

The International Federation for Spina Bifida and Hydrocephalus (IF) was founded by people with spina bifida and hydrocephalus (SBH) and their families in 1979. Over the years, it has grown from a voluntary association into a professional disabled people’s organisation (DPO) with global coverage, democratic structure and transparent and accountable processes.

The majority of IF member organisations are led and governed by adults with SBH or parents of children with SBH. Children are active participants in our members’ activities: they are involved in child-led activities, training workshops on independence and holiday camps. Nowadays, many young people with SBH have taken over the leadership of their organisations. In most cases, IF members choose close cooperation with medical and education professionals and researchers, given the importance of these professions to children and adults with SBH for their survival and development.

IF’s fast-growing membership now includes 60 member organisations in Africa, Australia, the Americas, Asia and Europe. Membership of IF is open to all nationally registered organisations that share IF’s vision and mission and actively involve people with SBH in their work.

In its work, IF is supported by the Global Expert Panel (GEP) and its Network. The Network is a multidisciplinary scientific advisory body to IF Board of directors. GEP a 7-person steering group of the wider Network. The individual GEP members are IF spokespersons on various topics, and are respected global experts in their field of expertise in top-level institutions.

PUSH! Global Alliance has grown out of the informal PUSH community of individuals and professionals, and now includes a wide range of global institutional stakeholders working together to accelerate spina bifida and hydrocephalus prevention, and to realize optimal care and a better quality of life for those affected. The PUSH! Global Alliance features Global Report Cards for Spina Bifida and Hydrocephalus Prevention and Care that provide meaningful, tangible information to help countries and organisations to move to action, further efforts and accelerate change. 

The International Federation for Spina Bifida and Hydrocephalus holds Special Consultative Status at the Economic and Social Council of the United Nations. Through the FRC programme, IF holds a privileged relationship with the European Commission. IF is a founding member of Child Help, a Belgian organisation that focuses on development cooperation. IF is part of the Executive Management Team of the Food Fortification Initiative (FFI). IF is represented at the Board of the European Disability Forum (EDF) and the Board of EURORDIS.

IF Award

IF Award statueEach year, the International Federation for Spina Bifida and Hydrocephalus (IF) presents the IF Award to an individual or organisation in recognition of their special contribution to the service of people with disabilities in general or to people with Hydrocephalus and Spina Bifida in particular. The award itself is in the form of a bronze statue. It was designed and created for IF by the Belgian artist Pierre Mertens. The current IF Award is a statue representing an Etruscan woman with a hole in her back and abdomen - the symbol of hope. It is representing both the pregnancy in danger by prenatal diagnoses as well as the disability.

An overview of the past IF awards

2016    Catalina Devandas and Myleen Christiaens
2013    Pierre Mertens
2008    Dr. Rob de Jong
2007    Flour Fortification Initiative
2006    Bo Hjelt
2005    Dr. Ben Warf
2004    Ryggmargsbrokk- og Hydrocephalusforeningen
2003    Geert Vanneste, CEO of CCBRT
2002    Björn Rundström
2001    Dr. Carla Verpoorten
2000    Hans Hoegh
1998    Guro Fjellanger
1997    Jim Begg from BLD
1997    Mami Kawasaki

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