Spina Bifida and Hydrocephalus and Pregnancy

The chances of women with spina bifida and hydrocephalus having straightforward pregnancies and deliveries have never been better.

This is partly due to increased knowledge and expertise amongst obstetricians and midwives, but also due to healthier, better informed and better prepared potential
mothers.

Ideally, all women should see their GP for preconceptual advice: if you have spina bifida or hydrocephalus, this is essential.

Be prepared Remember FOLIC ACID!

If you or your partner have spina bifida or a family history of spina bifida, you have an increased risk of having a baby with spina bifida. By taking folic acid for at least a month before you start trying for a baby (and continuing until the end of the 12th week of pregnancy), you can help reduce this risk by about 70%.

For you, the folic acid tablets available at chemists or supermarkets are not enough.
You need 5mgs a day and this is only available on prescription from your doctor. Then, before you get pregnant you should arrange to see these experts:

  • urologist: your kidney function will be checked to ensure that your kidneys are fit for the extra work they will have to do during pregnancy; your urine will be checked for infection
  • continence adviser: self-catheterisation may be difficult late on in pregnancy and you need to plan how you will manage. You will be prone to constipation and may need to change your bowel medication or management. If you have a stoma, this can be affected as your abdomen gets larger – it may change shape, your ostomy products may not stick well and may leak.
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  • physiotherapist: your balance will alter as you get bigger and you may need to use a wheelchair more often. The physio will advise on exercises to help prevent swelling of your legs and feet, advise on skin care and prevention of pressure sores and help if the growing baby causes you some breathlessness.
  • neurosurgeon: having a shunt is no contraindication to pregnancy. It will not harm the baby’s growth; a pregnancy will not harm the shunt. (for more information contact Nancy Bradley on hydrowoman@aol.com She has conducted a long term study on the relationship between pregnancy and shunts) If you haven’t seen your neurosurgeon for years, now is the time to catch up with him.
  • dietician: she will help you to keep your weight at a sensible level
  • GP: you may be the first patient with spina bifida or hydrocephalus that he has cared for in pregnancy. Give him and the Practice Midwife time to brush up their knowledge. And tell your ASBAH Adviser who may be able to put you in contact with another woman with a similar disability to yours and who has had a baby. She will have lots of tips and advice for you!
    When you are pregnant

Get to know your midwife really well and educate her about your disability and how it affects you (she should read ‘Pregnancy and Disability’ published 2007 by the Royal College of Nursing www.rcn.org.uk Tel: 0845 772 6100).

Decide where it will be best for you to have antenatal care – at home, at hospital, at GP surgery?

Ask about suitable antenatal classes. Arrange a visit to the local Maternity Unit – look at accessibility. Are they prepared for disabled mums? Are examination couches and beds height adjustable? Will there be a cot that you can manage? What equipment will you need to take into hospital with you?

Discuss antenatal testing and scanning and decide what you are comfortable with.

Does she know of an obstetrician who has delivered babies of women with spina
bifida?

Write a birth plan
Involve your partner and midwife in this. Include:

  • natural birth or Caesarean section (C-section is rarely necessary for non obstetric reasons)?
  • pain relief (the anaesthetist will discuss the possibilities of having an epidural)
  • positions for labour
  • will you be able to get into (and out of!) a birthing pool?
  • will your partner be able to stay overnight if you rely on him to assist with your care?
  • if you want to breastfeed, will there be help and encouragement?


After the birth

All new parents find the first few weeks difficult and you will be no different! Accept all help you are offered by your family and friends but don’t let them take over.

Disability Pregnancy and Parenthood International (www.dppi.org.uk) will give advice about obtaining specialist equipment you may need.
Freephone 0800 018 4730
Email info@dppi.org.uk
Ask for their free (to disabled parents) quarterly magazine.

Disabled Parents Network
(www.disabledparentsnetwork.org.uk) is an organisation of and for disabled parents who can offer peer support.
Helpline 0870 410 450
Email e-help@disabledparentsnetwork.org.uk

See your continence adviser to get your bladder and bowel regimes re-established. Try to rest when the baby sleeps.
Rely on your Health Visitor if you have worries or questions about your baby.
Don’t feel you’re being a nuisance - she’s there to help you.

Most women with spina bifida and/or hydrocephalus have normal pregnancies, uncomplicated deliveries and lovely babies.

With a little forethought and care, you could be one of them!