What to expect when you’re expecting


What to expect when youre expecting/

Congratulations, you are having a baby!


But you are here because your baby has just been diagnosed with Spina Bifida and/or Hydrocephalus or another Neural Tube Defect.

You have just become a member of a select group of wonderful parents, who, just like you, have also been on the same journey – some more recently than others but we all well remember how you are feeling right now because we have been there.  We too have cried the tears, experienced fear of the unknown, had a million questions of how, what and why and understand where you are right now.

The prognosis and information provided by medical professionals on diagnosis about Spina Bifida can sometimes be overwhelming.  Obstetricians and Gynaecologists can be very negative when assessing the quality of life for babies diagnosed with Spina Bifida – this is a pity because most lack any practical experience with this condition.  They may suggest that you terminate your pregnancy.  Ask to talk with a Paediatrician who cares for children with Spina Bifida for more information.  They may also be able to put you in contact with a local family.

Growing and developing inside you, your baby is in the best environment it can be, so don’t panic and keep asking questions.  Your baby has no pain and you have time to make unhurried, unpressured and informed decisions. Your baby is not a collection of medical facts; he or she is your baby and will grow and develop as a unique individual.  Your life will be filled with the same delight and difficulties that are part of raising all children.  You will get to know and enjoy your baby’s special personality. You and your baby have an absolute right to the medical, social and educational support to make your lives as smooth as possible.

No two babies born with Spina Bifida will be affected in exactly the same way.  There are a long list of potential problems associated with Spina Bifida, but don’t be dismayed – not all of these will arise in your child.  Please discuss any concerns that you have with the medical or surgical team.

Remember – you are your baby’s best advocate and have a right to know and understand what is happening.  You will develop the skills that you need to help your baby as he or she grows up.

We highly recommend you to watch a You Tube clip called Project ELI.  The goal of the video is to be a source of comfort to families who have just heard that they are expecting a baby with Spina Bifida as there are a lot of questions and anxiety that come with this prenatal diagnosis. You will not regret taking the time to watch it …

If you are a expecting a baby diagnosed with a neural tube defect like Spina Bifida, we would love you to Contact Us.  We are here to offer help, support and information to you.

More support is available from Parent 2 Parent.  They have trained Support Parents who know and understand from personal experience the challenges, frustrations and special joy that comes when you have a child diagnosed with Spina Bifida.