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.
Cailin's Experience - ‘My rights: Independent living, activism and participation for young people with Spina Bifida and/ or hydrocephalus’
In October, IFSBH ran a 3 day course in Lisbon, Portugal, for people aged 18 – 35 called: ‘My rights: Independent living, activism and participation for young people with Spina Bifida and/ or hydrocephalus’. One of the key things all participants had to do on their return to their respective countries was share their experience. Cailin and Murrin attended from our organisation and this is Cailin's story in her own words.
Hi there! My name is Cailin McKie and I am 20 years old. I live in Ayrshire in the west coast of Scotland and am a member of SBH Scotland. I am a forth year student studying Prosthetics and Orthotics at the University of Strathclyde in Glasgow. I would like to share my experiences about a recent disability rights training course I took part in.
The name of the course was: ‘My rights: Independent living, activism and participation for young people with Spina Bifida and/ or hydrocephalus’. It was organised by the International Federation for Spina Bifida and Hydrocephalus and the course took place in Lisbon, Portugal. The course was aimed at young people aged 18 – 35 living with Spina Bifida.
I heard about the IF course in Portugal through SBH Scotland. I saw the course advertised on their Facebook page and thought it looked very interesting.
I wanted to take part in the course because I wanted to learn more about my rights as a young person with a disability and about advocacy. I also was interested in the course because of my background as a student prosthetist/ orthotist. I work closely with people with disabilities on a daily basis and would like to help create a better future for these people.
The course was about disability rights, activism and independent living. The course also covered topics such as sexuality, accessibility, models of disability, disability awareness in education/ employment and reasonable accommodation. The United Nations Convention on the rights of persons with disabilities (CRPD) was also covered in detail.
I did not really have any concerns before I went on the course. I was excited to meet like minded people from across Europe.
I travelled to Lisbon by myself. A Personal Assistant (PA) could accompany you on the trip but I wanted to travel alone to become more independent. It was my first time travelling by plane alone so it was a big achievement for me.
The journey to Lisbon was arranged and booked by the International Federation’s travel agents. They covered the cost of flights and accommodation. I flew from Glasgow to London then London to Lisbon. I experienced delays as often happens with airlines and missed my connecting flight to Lisbon. I had to be re-booked on the next flight later that evening. I was proud of myself for overcoming these challenges that go along with travelling. The hotel we were staying in was located close to the airport so I got a taxi there. There was also a rail link from the hotel that took you very close to the hotel. All participants were advised of possible travel arrangements in advance.
The hotel we were staying in was very accessible. The course took place in one of the hotel’s conference rooms. The hotel had been well researched had accessible facilities such as shower chairs organised for the participants. It was also fully equipped with lifts and had very spacious rooms.
I was away for 3 nights. I arrived in Lisbon on the Thursday evening. The course ran from Friday – Sunday.
The most valuable thing I learned on the course was about the challenges other people with disabilities face. As I am very mobile I often don’t think about accessibility issues e.g. wheelchair access, stairs, lowered kerbs. Hearing the experiences of the other participants made me want to be more involved in advocacy and have the potential to influence change.
I met lots of people from other countries on the course. There were eleven other participants on the course. Murrin and I were representing Scotland. The others were from Portugal, Ireland, Sweden, Belgium, Turkey, Croatia and Estonia. It was great to meet people from different countries with similar experiences. I felt I could relate to everyone so well and we all had an instant connection due to all living with Spina Bifida. I felt very comfortable in the group and felt I could talk about anything with my new friends. I shared a room with a lovely girl from Belgium who was a similar age to myself. I enjoyed having a room mate since we were both in a foreign country and it was a new experience for us both.
It was interesting to hear how different things were in different countries regarding disability. In many other countries people must pay for medical supplies e.g. catheters or pay for medical insurance. In the UK we are fortunate to have such things covered by the NHS which is often taken for granted. Different countries also have different approaches to disability in general. For example, in Portugal there is a sign that is displayed in bars, restaurants and shops implying that people with disabilities need to be served first. However, what should really be done is have lowered bars and counters for wheelchair users. Make the facilities accessible for all is the important message.
I have never done anything like this before. It was wonderful to meet other young people with Spina Bifida. The course was also very educational and has encouraged me to be more active in my local Spina bifida group- SBH Scotland.
I thoroughly enjoyed spending time in Portugal’s beautiful capital city Lisbon. I would love to return to explore more of the area.
My days consisted of taking part in the training from 9:30am to approximately 5:00pm. The training involved ice breaker games, group discussions, and presentations delivered by the trainers. The third and final day involved working in small groups to come up with an advocacy action plan on a specific topic. The topic I was working on was disability awareness and inclusion in the education system. This was then presented to the other participants and trainers. The training built up our knowledge and skills as well as going into the theory of disability rights. In the evenings we had free time to explore city. We went for a social dinner one evening to a lovely local restaurant with all the participants and trainers. We also visited the oceanarium and took a ride on a cable car over the promenade. We also went to the local shopping mall which was huge!
The course was very well organised and I did not experience any problems while I was there.
I wanted to learn about raising awareness of disability particularly Spina bifida and hydrocephalus. A lot of people still don’t know much about the condition and I feel it is important to change this.
I gained a lot out of participating in the training. I have gained valuable knowledge and skills that has set me up well for future advocacy plans I have. I have also made friends for life. All the participants were so friendly and we all have so much in common. I hope to see them all again sometime soon. I have made great memories on my trip and would love to do something like this again.
If anyone wishes to take part in any future training events keep an eye on the International Federation for Spina Bifida and Hydrocephalus’s Facebook page. They hope to make the training an annual event! Also follow SBH Scotland’s social media pages as they advertise such events too. All that is required is to fill out a simple application form explaining why you are interested and what you want to gain from the training. I would encourage anyone to take part as it was a very positive experience. I had the most incredible time and would highly recommend it! It is a great opportunity to meet new people and learn new skills.
Murrin's Experience - ‘My rights: Independent living, activism and participation for young people with Spina Bifida and/ or hydrocephalus’
In October, IFSBH ran a 3 day course in Lisbon, Portugal, for people aged 18 – 35 called: ‘My rights: Independent living, activism and participation for young people with Spina Bifida and/ or hydrocephalus’. One of the key things all participants had to do on their return to their respective countries was share their experience. Cailin and Murrin from our organisation attended and this is Murrin's story from her journey.
- How did you first hear about the IF course in Portugal?
My dad tagged me in on the IF Facebook post advertising the course.
- What made you decide that you wanted to take part in the course?
As a young adult who has just started college, I am beginning to think more about my own independence what my rights in the world are. This course seemed like a good opportunity to learn more and to give me some tools to start take control of my own life.
- What was the course about?
The course was about my rights as a disabled person as set out by the UN Convention on the Rights of Persons with Disabilities and also independent living as a young disabled person. We were taught how to use the convention and apply it to situations that we may find ourselves in. one aim of the course is to help us with our activism skills to try and effect change where it needs to happen.
- Did you have any concerns before you went?
I was a bit nervous before I went as I did not really know what the course would entail, also I was worried as I did not know anyone else who was going.
- Did you travel alone or were you able to take any family or friends?
You had the option to take a Personal Assistant to help you, I took my Dad but some people travelled alone.
- How was the journey to your final destination? Was it accessible for you? Or were there issues along the way?
The journey out was okay, but at Lisbon airport they did not bring my wheelchair back to the door of the plane as requested, this meant that we had to sit on the plane for about 40 minutes while they brought a different chair with assistance. When the then secured this chair in place in the transport vehicle (from the plane to the terminal) the chair was strapped down but there was no seatbelt across me, if the vehicle had braked suddenly I would have fallen out of the chair. However all of the people were very friendly and spoke excellent English. Our trip back was more of a problem due to delays, my dad had to run while pushing me through Brussels airport to catch our connecting flight. We made it but our luggage did not. We were not reunited with it until many phone calls and 48 hours later.
- How long were you away for?
The course lasted 3 days, we arrived the day before and left the day after. In total we were there for5 days.
- What was the most valuable thing you learned from the course?
The most valuable thing I learned was that independent living does not have to mean you live on your own doing everything but rather that you live your own life with the right assistance to help you live your life in the way you want to. One of the speakers, Kamil was an amazing advocate for independent living and very inspiring.
- What would you like to share?
I’d like to inspire others with spina bifida and other disabilities to believe in themselves and that they can make a difference if they really want to. I’d like to help others to learn how to be advocates for issues that they believe need to be addressed by sharing some of the tools that I learned.
- Did you meet others from other countries?
Yes, I met one girl from Scotland who I had never met before even though we are quite close in age, however I also meet people from Portugal, Greece, Sweden and Belgium, amongst others. We shared a fantastic weekend and they are all amazing people in their own right, I now have an international network of friends with Spina Bifida.
- Were there any big differences in the experiences they had in their countries that you felt you didn't have in Scotland?
I found that we all worried about the same sort of things and faced the same challenges in life
- Had you done anything like this before?
No, I had never had the chance to do anything like this before.
- How did you enjoy spending time in Portugal?
I liked being in Portugal in October as it is still warm, the people are very friendly, in fact before we even got off the plane in Lisbon we had met an architect who is involved in trying to make the town accessible, who emailed us their accessibility guide to Lisbon and asked us to let them know what we thought of it. Lisbon is a beautiful place that I would like to visit for a holiday some day
- What did your days consist of?
Our day started with Breakfast which was a large buffet which you could pick from and eat as much as you liked. We then went into the training from 9:30 until 11 when we had a half hour break for coffee and personal care, we then had another session until 1 when we broke off for lunch, which was another extensive buffet. At 2:30 we went back into the training until 5:30PM with one other brief coffee break during this session. During the sessions there were 3 people leading the training who talked to us about the different topics and showed us presentations. We also had ice breaker games to help us get to know each other and to break up the heavy learning. We would break into smaller groups and carry out exercises to help us put in to practice the knowledge we were being taught. They were long intensive days and this was as far from a holiday that you could get. In the evening we had some free time where we went for a meal together with members of the Portuguese spina bifida and hydrocephalus association, where I tried Squid for the first time! (In case you are wondering squid is yummy!) We also visited the aquarium and saw lots of sharks tiny frogs and jellyfish.
- Were there any challenges throughout your time in Portugal?
My biggest challenge was overcoming my fear of speaking in front of lots of people, I still have this fear but I know that some of the others were nervous about this too. The pace of learning was also quite fast and my hydrocephalus really needs a lot of repetition to help things stick, this led to me being unclear on some things, I would go over some of the stuff later with my dad to try and make it sink in.
- Was there anything in particular you wanted to learn about?
I really wanted to learn about my rights as a young disabled person.
- Did you get everything out of the course that you had hoped to?
Yes I feel I got everything out of the course that I wanted and maybe more.
- If someone were to wish to take part, how would they go about applying?
Keep an eye on the international Federation for Spina Bifida and Hydrocephalus Facebook page and twitter feed, they will post here if they have any course coming up along with instructions on how to apply.
In only 6 weeks we welcome our new Strictly Come Prancing event!
Twelve couples are already in training, hoping to win the coveted glitterball trophy but who are the four people entrusted with their fate??? It's time to meet the judges...
1) Meet our Head Judge, Gok Wan. Gok Wan is an award-winning TV presenter and fashion expert. His name is now synonymous with offering straightforward fashion advice to women to boost their appearance and confidence, no matter their age or shape. Gok’s engaging approach, combined with his personal charm, has enabled him to build a reputation as one of the UK’s best known TV presenters. But the question on everyone's lips is... Will he like our dance couple's performances?
2) Meet our judge who loves all things fabulous - it's Mr Fabulous himself!!
This is not his first time judging, having been involved in lots of charity events before. He has many projects on the go at all times as well as being a radio presenter on Scene Radio and a regular TV presence on STV. He is involved with lots of different causes and is proud to have fostered over 50 children! He and his husband were even one of the first same-sex couples to adopt a child back in 2009!
When we asked what kind of judge he plans on being, his response was,
“Mr Fabulous is ALWAYS fabulous, so I’m going to be the nice, bubbly judge!”
3) Meet singing sensation, Carol Laula! Carol says she has two left feet so is much happier being a judge than a dancer! However she knows about a good performance being a well known singer/songwriter. Her song 'Standing Proud' was even picked as the anthem for Glasgow's year as European City of Culture in 1990!
Carol’s worked with many Scottish artists, including Stuart Nisbett (The Proclaimers) and has released 8 albums!
When she judges the dancers, she says she will be looking for three things.
“Enjoyment, enthusiasm and timing”.
Let’s hope our dancers meet her checklist!
4) Last but by no means least - Meet April Stuart Macrae, who owns and teaches at April's Street Feet. She has lots of experience dancing having competed in competitions herself and guiding her own dancers to victory on many occasions!
She admits that, while she is usually quite strict on her own kids, she is aware that not everyone competing in November has dance experience, and while it would be good to see some technique,
“If they give a good performance and look like they know what they’re doing then good on them!”
Look out for all our Strictly updates on our Twitter and follow #SCPrancing
Tickets are going fast! Buy your today online.
A host of inspiring dancers, including some famous Scottish faces, are getting ready to do their bit for cha-cha-charity by taking part in Spina Bifida Hydrocephalus Scotland (SBH Scotland)’s first ever Strictly Come Prancing event.
Saturday night fever is set to sweep through Glasgow’s Double Tree Hilton Hotel on 10 November, when 13 couples – including Heart Scotland radio presenters Paul Harper and Lynne Hoggan, as well as reality star Brian Matthews, formerly of GLOW – take to the dancefloor to try to impress head judge TV fashionista Gok Wan. The ‘How To Look Good Naked’ star will be joined on the judging panel by singing sensation Carol Laula, radio presenter James Smith and dancing instructor April Stuart Macrae.
To make sure they know their mambos from their rhumbas, the couples will prepare for their big night with 10 weeks of professional coaching at April’s Street Feet’s dancing studio.
Taking its lead from the hit BBC show, SBH Scotland’s Strictly Come Prancing distinguishes itself from similar events by opening up the contest to same sex couples. Encouraging inclusivity, the inaugural event will see three couples of the same sex competing for the coveted Glitterball Trophy.
All proceeds from the night will go to SBH Scotland and our services to support children, young people and families affected by lifelong disabilities spina bifida and hydrocephalus.
Strictly Come Prancing competitor, and Heart radio host, Lynne Hoggan said; “I am really looking forward to taking part in this event, I guess every girl wants to dance like Baby from Dirty Dancing at some point in their life. Plus, it's a great new way to keep me in shape and I can't wait to get all glammed up for the big night.”
Richard Donald, events manager at SBH Scotland, said: “Strictly Come Prancing is not just about raising money for the charity, it’s about flying the flag for diversity and equality, as well as having a bit of fun.
“We’ve got a great line up, and it’s shaping up to be an incredible night. All 26 dancers have committed to putting themselves through 10 weeks of training to get in the best shape possible for the big night and they are all desperate to show off their moves to Gok, and the other judges.
“We look forward to seeing them take to the stage in November, and hope to see as many people in the crowd as possible.”
Tickets for the event are now on sale online at a cost of £65 per person, or £600 for a table of 10.