In utero surgery for spina bifida

When a baby is born with spina bifida their spinal cord is exposed and babies are operated on immediately to close the lesion. However, with the in utero fetal surgery, this operation takes place much earlier.

The surgeon opens the uterus, exposing the spina bifida without delivering the baby. The defect is then closed up and uterus repaired.

Although neither treatment (pre or post birth) can fully cure the condition, early repair of the lesion may prevent further damage of the spinal cord which can lead to better outcomes for the baby's involved.

This is not a new surgery but one which has been performed for many years in the USA and more recently in Europe. The end of 2018 also saw Great Ormond Street Hospital in London undertake their first operation.

What next? Can any expectant Mum in Scotland whose baby has spina bifida have the surgery?

The following information will continue to be updated but the current position in Scotland is that:

Any Mum-to-be who would wish to find out more in relation to her options should, in the first instance, speak to their consultant as quickly as possible and in any event as soon after the 20 week scan as possible. The consultant or specialist will spend time with you and explain the options available in your case and give you time to come to a decision as to the best way forward.

The current eligibility criteria for consideration for surgery is quite restrictive and Mums to be need to be clear about the risks involved in the surgery for themselves as well as their baby. Speak to your consultant or other health specialist to ask them to assess whether or not you would be eligible for surgery. This is a complex assessment which looks at amongst other things the current health or both mum and baby, the type of defect on the spine, its location and whether or not there are other complications.

Importantly, only after a full assessment has been carried out by your consultant/specialist and any questions you may have as a result of the discussion, will all of the available options for you to consider be shared with you. You will then be given some time to consider these options before you agree on a way forward.

SBH Scotland staff will be available to you to speak to at any time throughout this process. Please feel free to contact them on 03455 211 300 or email them at any time.

Most professionals will be more than happy if you want to bring a partner, friend or colleague along with you to any of the meetings. SBH Scotland staff are also available to support you during this time. They are also more than willing to attend any consultations.