Spina Bifida Awareness Week 2021 - Ivy's Story

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.