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In Utero Surgery for Spina Bifida

News broke last week of the first Scottish pregnancy to undergo the in utero fetal surgery for spina bifida. But what is this surgery and what does it involve?

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.

 

New stats reveal 91% of UK women have insufficient folate levels to support a reduction in neural tube defects

A study carried out on behalf of Public Health England and the Food Standards Agency which has been published today (16 March 2018), has revealed as many as 91% of women of childbearing age (16 – 49) in the UK are at increased risk of a neural tube defect (NTD) affected pregnancy due to a folic acid deficiency.

image of flour and wheatFolic acid has been found to be essential in the reduction of NTDs such as spina bifida in unborn babies. The report, which assessed the diet, nutrient intake and nutritional status of the general population, supports this by stating that increased folic acid intake through supplementation has been shown to reduce the risk of pregnancies affected by NTDs, if taken before birth.

Spina Bifida Hydrocephalus Scotland (SBH Scotland) has long advocated for the fortification of flour with folic acid to help reduce the number of NTDs. The charity welcomes the findings and calls on the UK Government to take steps to introduce legislation which makes fortification of flour with folic acid mandatory.

Chief Executive of Spina Bifida Hydrocephalus Scotland Andy Wynd MBE said; “With this report finding there’s a further increase (91%) in the number of women in the UK not receiving the adequate levels of folic acid, it again supports our ongoing calls for the mandatory fortification of flour.

“Foods such as lentils and dark green vegetables produce naturally high levels of folate, and it is already added to some foods, including breakfast cereals. However, it is through the fortification of flour where the real benefits are seen, with other countries recording up to 70% reduction in NTD pregnancies following the mandatory fortification process.

“We believe flour fortification would produce similar results in the UK and with overwhelming evidence to support it, we, once again, ask the UK Government to make fortification of flour a reality.”

Scotland specific issues

Scotland has more live births per head of population with spina bifida than anywhere else in the UK. Possibly due to religious and cultural differences, only 45% of pregnancies are terminated in Scotland as compared with around 80% in the rest of the UK.

Taking daily folic acid supplements, at the correct recommended dose* (0.4mg) three months prior to conception, could reduce up to 70% of these pregnancies from being affected and lower both the number of those born with the condition and the number of pregnancies terminated.

Children born with spina bifida often have paralysis in the lower limbs, urological, neurological and orthopedic problems which often become more significant throughout life. Fortification of flour would reduce the number of babies born with this lifelong disability. Find out more about folic acid and flour fortification on the Spina Bifida Hydrocephalus Scotland website www.sbhscotland.org.uk/folic-acid

*Some females have an increased risk of a pregnancy being affected by an NTD and should be taking a higher dosage of folic Acid

Find out more about our flour fortification campaign

Summary of results from National Diet and Nutrition Survey Rolling Programme.

Those affected by any of the issues associated with spina bifida or hydrocephalus, can call the SBH Scotland Family Support Service helpline on 03455 211 300 or email them.

UK Government urged to add folic acid to flour after new study

A study published in Public Health Reviews has revealed previous data showing the set upper limit of folate was flawed. The experts involved are now urging the Department of Health to approve the fortification of flour with folic acid in order to help reduce neural tube defects (NTD), such as spina bifida, in unborn babies.

This follows the Scottish and Welsh Governments recently writing joint letters to the UK Health Secretary urging him to make the fortification of flour with folic acid mandatory on a UK wide basis.

Make time for folic acid image

Recent figures show folate levels in Scotland are particularly low compared to international standards. In Scotland, 81% of women of childbearing age are more at risk of an NTD affected pregnancy because they don’t have enough folic acid – which is 6% higher than the UK as a whole.

Chief Executive of Spina Bifida Hydrocephalus Scotland Andy Wynd MBE said; “We welcome this new evidence published in the Public Health Reviews which shows there is no medical reason to stop folic acid being added to flour. As a charity we have long advocated for mandatory flour fortification in order to reduce the number of children born with neural tube defects such as spina bifida. In light of this new evidence, we believe the UK Government should be actively taking steps to introduce legislation to ensure that mandatory fortification of flour becomes a reality in the UK.”

“In Scotland, the issue of flour fortification is particularly relevant as more children are born with spina bifida than anywhere else in the UK. Flour fortification in other countries has resulted in up to 70% reductions in pregnancies according to recent studies and we believe this would produce similar results in Scotland.”

Scotland specific issues

Scotland has more live births per head of population with spina bifida than anywhere else in the UK. Possibly due to religious and cultural differences, only 45% of pregnancies are terminated in Scotland as compared with 80% in the rest of the UK.

Taking daily folic acid supplements, at the correct recommended dose (0.4mg) three months prior to conception, could reduce up to 70% of these pregnancies from being affected and lower both the number of those born with the condition and the number of pregnancies terminated.

Children born with spina bifida often have paralysis in the lower limbs, urological, neurological and orthopedic problems which often become more significant throughout life. Fortification of flour would reduce the number of babies born with this lifelong disability. Find out more about folic acid and flour fortification on the Spina Bifida Hydrocephalus Scotland website www.sbhscotland.org.uk/folic-acid

Parents in Scotland are offered impartial and non-judgmental advice by SBH Scotland to enable them to make informed decisions about their pregnancy. Whatever their final decision, SBH Scotland will always be there for support and advice whenever needed. Those affected by any of the issues associated with spina bifida or hydrocephalus, can call the SBH Scotland Family Support Service helpline on 03455 211 300, email: support@sbhscotland.org.uk or visit www.sbhscotland.org.uk

Aberdeenshire School Initiative Wins at National Awards

Spina Bifida Hydrocephalus Scotland’s work with Dalespark Primary School in Peterhead has seen it crowned winner of the ‘Education Partnership’ Award at the ScottishPower Foundation Awards in Glasgow last night (7 Nov).

Clare Cogan Turner of SBH Scotland is presented with the education award from Elena Sanz of Scottish Power Foundationthe Scott

Spina Bifida Hydrocephalus Scotland (SBH Scotland) is working with teachers and students at Dalespark Primary; which has an exceptional approach in working for the inclusion of those with additional support needs. Together, they are producing an educational film that will offer insight into aspects which have worked well for their members affected by spina bifida and/or hydrocephalus.

This film, along with existing SBH Scotland resources, will be promoted by the charity’s support workers to schools across Scotland over the next twelve months. It will serve as a model of how these complex disabilities can be approached by those working in an education setting to help all children reach their full potential.

SBH Scotland was granted £20,000 from the ScottishPower Foundation at the beginning of the year. This funding went towards our Be All You Can Be work. The programme offers specialist early intervention support for 186 children aged 0-8 across Scotland and an estimated 558 carers or siblings.

Representatives from the charity attended the ceremony which took place at the new Glasgow HQ of ScottishPower, funder of the ScottishPower Foundation. SBH Scotland received an additional £5,000 as part of the education award.

Deborah Roe, Director of Fundraising for SBH Scotland, said, “We are very grateful for the continued support of the Scottish Power Foundation and honoured to win this award which will enable our inclusion work in schools to continue into the future. We’d also like to thank Dalespark Primary School for their dedication in working with us on this important project.”

Ann McKechin, Trustee and Executive Officer of the ScottishPower Foundation, said: “It’s fantastic to see Spina Bifida Hydrocephalus Scotland partner with Dalespark Primary School to improve the lives of young people facing difficulties in our local communities and create best practice tools. The project is a model example of how charities and education services can successfully work together to foster better conditions for children, and a very worthy winner.”

The ScottishPower Foundation was established in 2013 to support charitable projects and reinforce the energy company’s commitment to charitable work throughout the UK. The Awards ceremony is now in its fourth year and has become a yearly platform celebrate the work of the projects which the Foundation has provided funding to during 2017. This year it donated more than £1.8M to 26 organisations.

Continence Information Day

SBH Scotland are holding a ‘Continence Information Day’ on Wednesday the 25th of October 2017. It will be at The Dan Young Building from 2pm-7pm and you can drop-in at any time. The session is open to anyone looking for continence advice.

By attending the information day you will be able to talk with some of the leading continence providers for bowel and bladder care. They’ll be able to answer your questions and show you their new and existing products.

· View new & existing products on the market

· Speak directly to providers

· Ask questions

· Find out about local services

If you require any further information, please;

Tel: 01236 804944

Email: teleclinic@sbhscotland.org.uk

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