Shine - Spina Bifida. Hydrocephalus. Information. Networking. Equality.

Connor and Arthur's Story…

"During this session both families attended, and Connor and Arthur met. They really hit it off."

Both Connor and Arthur had not met anyone else with the same condition before. Both families had received support from Shine for different issues over the last couple of years for the boys conditions but the boys themselves had not had much contact with Shine directly.

During support calls last year both families decided to join their local WhatsApp group in the Devon area where the parents were able to access peer-to-peer support remotely.

This year the Little Stars Team offered an opportunity for this regional WhatsApp group to have a closed Zoom session and meet each other. During this session both families attended, and Connor and Arthur met. They really hit it off and enjoyed a good chat about a mixture of things, but mainly their shared love of Lego and Nerf guns.

The parents managed to chat a little but the boys stole the show! One of the boys was quite shy and it was so lovely to watch him chatting away so confidently on the call. The question then came up about where they both lived, and they realised they were only 20 mins away from each other. They both asked their families if they could meet one day. After the Zoom session we were made aware of both families had got in touch with each other already and started to plan a date to meet up.

The boys met in a local park and had a great time together. Hannah, Arthur’s mum said – “It has been so helpful to meet another family with a child with spina bifida. Arthur is at the age where he needs to know that he isn’t alone and that there are others dealing with similar things." It was so lovely to see him and Connor getting on so well, playing and laughing together so naturally.”

After they meet Arthur said “I really liked that Connor was really funny and friendly, and I really want to meet him again.”

After the Zoom session, Dawn, Connor’s mum said – “It was really lovely and I haven’t seen Connor like that on Zoom before. He has already said he wants to meet up with Arthur, thanks so much for organising.”

After the boys met, their mums shared pictures with Shine. Dawn said “It was a great day and it has also paved the way for some local based activities that Connor is considering doing with Arthur." Connor said “Arthur is one of my new best friends.” They have plans made to meet again and have a Nerf gun battle!

Support Shine through your business today to support more families like Connor and Arthurs to access the support they need, when they need it.

This week (18^th-24^th October 2021), Shine are holding Spina Bifida Awareness Week, our annual week long campaign to increase awareness and raise vital funds.

As part of the week, we are sharing the stories of some of our members.

Here's Ivy's story …

"We know Shine will always be there for us should we need them."

We were told at our 20 week scan that Ivy had spina bifida. We had no idea what this was or what it would mean for our baby. We went against medical advice and continued with the pregnancy - the baby we had tried 8 years for and the baby we were told we’d never have.

Ivy was born with closed lumbar sacral myelomeningocele. She had closure surgery the morning after she was born.

We live in Brighton and due to her condition, she needed to be born by c-section at Kings Hospital in London; to be close to the specialists. But, a week after her surgery she developed sepsis in her wound which meant a 5 week stay in hospital. I was there on my own whilst her dad commuted between, work, home and hospital. It was a very difficult time but we were grateful for the help from Ronald McDonald House, who gave me a place to stay whilst Ivy was in hospital.

Ivy had a dislocated left hip and trialled a Pavlik Harness for a week. This was unsuccessful, so it was decided to leave her hip until she was older and possibly weight bearing.

Ivy was born with club foot. Her left foot turned inwards and her right foot was bent up. (The official terminology is congenital talipes equino varus in her left foot and calacaneovalgus in her right).

When she was about 6 months old our local hospital started the ponseti method of straightening out her left foot. She had weekly casts for about 8 months until she had a tenotomy in December 2020 to release the tight tendon. With this completed, she now has a ‘floppy foot’. Due to the lack of movement and sensation, her surgeon said this was the best option for it to be braceable in an AFO (Ankle Foot Orthoses).

During surgery they also operated on her right foot, which we weren’t expecting, but we are glad they did it at the same time. Now she has two straight feet! In January 2021 she got her first pair of AFO’s. She wore them 23 hours a day for 6 months and now just wears them during the day to help her stand. She loves them and calls them her “dooger-doogers!” - I think this is from when I tickle her feet and say “dooger, dooger, dooger” and now it’s just stuck!

Ivy has an uncomplicated left duplex kidney, which basically means she has 2 ureta’s from her left kidney going into her bladder (and one on the right). Luckily this doesn’t cause her any problems, it’s just another thing to keep an eye on.

During her first week of life, a bladder scan showed she wasn’t able to fully empty it so I was taught C.I.C (clean intermittent catheterisation.) I found this news really hard to take, but quickly learnt how to perform this with help from a bladder nurse at Kings Hospital. Ivy needs C.I.C every 3 hours, day and night which myself and her dad are able to do.

She takes oxybutynin twice a day to relax her bladder muscles, so it’s really important we empty her bladder as this medicine stops her bladder over contracting. When she was around 6 months old and weaning, I noticed she was finding it harder to pass stools, so she started taking lactulose twice a day to keep her regular. So far, these medicines are working well and are regularly reviewed with the spina bifida professionals.

Ivy was also born with C-shaped thoracolumbar scoliosis. This was picked up by my GP at her 6 week check-up. This was a total surprise for me, as it wasn’t noticed before. So far, this hasn’t caused too many problems. When she was learning to sit up, she’d lean to one side, but as she’s grown she’s gotten stronger. She is reviewed by a specialist spinal team, who so far say she needs no intervention. Phew!

Ivy has just turned 2 and is a really happy smiley little girl. She hasn’t let her disability hinder her and is very strong willed!

At diagnosis, we were given a bleak future. That she would most likely be paralysed from the waist down, have bowel and bladder problems, and no quality of life. Despite these concerns we gave her a chance at life. The regular scans we had showed her moving and kicking and with a strong heartbeat. There was no other choice, we couldn’t wait to meet her!

Ivy is a really adventurous little girl. We try to give her the same opportunities as any other able-bodied child. She loves to go to the park and especially loves climbing! Ivy loves a challenge, and she sees every obstacle as an opportunity to learn new skills.

She loves the company of other children, chatting to them and following what they’re doing.

On a recent trip for the first time to soft play, she watched the other toddlers walking up the foam steps, she really wanted to do this too, so I held her upright and she made walking movements with her legs until she was at the top!

Any parent gets excited when their child meets a major milestone, but for us it was even more special. For her to do the things we were told she’d probably never do was amazing! From the first time she sat up, to rolling over, to sliding along the floor on her belly! The casts made crawling difficult so as soon as those were off, she learnt to get onto her knees.

I love seeing her crawling around now, she’s getting so fast! Especially when she goes into another room and says “mummy, get me!”

We’re at the stage now, where she’s trying to pull herself up to stand, with furniture at just the right height, she’s able to get herself onto her knees and trying to get onto her feet!

At home Ivy has a Scooot which is like a mini wheelchair. We’ve recently moved to a wheelchair accessible property and she is whizzing around the place in it! Happily going from room to room and negotiating corners.

She also has a standing frame, which she spends an hour a day in. This frame allows her to participate in activities vertically, such as drawing or cooking whilst being supported by the frame. She has lovingly called this ‘Insa’ after her physiotherapist who we see regularly!

What was life like before your received support from Shine?

The worst part was definitely diagnosis at the 20 week scan. We naively went to the anomaly scan just expecting to find out if we were having a boy or a girl. As the 12 week scan and blood tests were all ok, we weren’t expecting any other news.

Being taken away and led into a side room was nerve racking. I remember the room well, it was like a large cupboard with no windows and just a box of tissues on the table.

When we were given the news we had no idea what it would mean, but we didn’t care. She was ours and that was it.

We were referred to the foetal medical unit in London and had an appointment the next day. That night was full of Google searches and questions. We had no idea of what spina bifida would mean for her. But, we had weekly scans and seeing how she was moving around on the scan and otherwise healthy, really filled us with hope.

Every day with Ivy is a high though, she amazes me with her determination and I’m loving watching her personality develop. She’s quite a character!

What has Shine done in terms of support for your family?

We didn’t know about Shine until Ivy was born, but they have been there for us ever since. We’ve had several phone calls and emails from our lovely Support and Development Worker, Hayley, and some home visits (before Covid). Hayley helped us when we needed to move to a wheelchair accessible property by writing a letter to our local housing officer to support our move from a one-bedroom basement flat. She also helped me fill in an application for Disability Living Allowance for Ivy.

I find the emails and newsletters helpful and informative. I enjoy reading about the fundraising, the teams and how other families are doing.

We know Shine will always be there for us should we need them.

To find out more about Spina Bifida Awareness Week, visit Shine's website - Shinecharity.org.uk/SBAW

Shine is celebrating this week, after a government announcement that folic acid will be added to non wholemeal flour in the UK as standard.

The announcement comes after years of campaigning by Shine and is backed by long-standing research that shows increasing folic acid intake prior to conception reduces the chances of a Neural Tube Defect (NTD), such as spina bifida or anencephaly.

It will bring the UK into line with over 80 countries around the world who already fortify food. The USA and Canada have fortified for 20 years and have seen a staggering reduction – in some areas by as much as 50% - in pregnancies affected by NTDs.

Shine’s CEO, Kate Steele, says: “Although we firmly believe that all types of flour should have been included in the mandate, Shine is delighted by the Government’s decision to support mandatory fortification of the most commonly consumed flour in the UK with folic acid – a move we’ve campaigned for over many years”.

“In its simplest terms, the step will reduce the numbers of families who face the devastating news that their baby has anencephaly, and will not survive. It will also prevent some babies being affected by spina bifida, which can result in complex physical impairments and poor health.

“It’s over 20 years since the first countries adopted this important public health measure, and started to benefit from a significant reduction in the incidence of pregnancies affected by neural tube defects. Now, at long last, people in the UK will share at least some of that advantage.”

Gill Yaz, Shine’s Health Development Lead, says: “This is such a positive step change in improving public health across the UK for so many, now and in the future. It really is something to celebrate!”

And the benefits are not exclusive to expectant parents and their unborn children. Men are also often low in folate, and many teenagers are clinically deficient in folate, risking their long-term health and increasing their risk of dementia, depression, and anaemia.

Gill continues: “Shine will continue to advocate that all women who might become pregnant should take a daily supplement of folic acid, whether or not they are trying for a baby. Mandatory fortification of white flour, coupled with the recommended supplement of 400mcg of folic acid at least 8 weeks before becoming pregnant, will mean a lower likelihood of an unborn baby being affected by spina bifida or anencephaly.”

Shine remains committed to continued campaigning so that fortification of all flour is made mandatory.