” Bella is doing so well and is such a strong, beautiful, happy, smiley, little fighter who loves her cuddles and who is so very loved and absolutely doted on by her 2 big brothers. “

Q: What is your SB warrior’s name?

A: Bella

Q:Where do you live?

A: Scotland

Q: What type of SB does she have?

A: Spina Bifida, Hydrocephalus and chiari II malformation

Q: How can we continue to follow your story?

A: On my YouTube channel: Bellaroo and mummy

Firstly I’d like to introduce myself. My name is Abby, I am married to Martin and we have 3 children. Findlay is 8, Oscar is 5 and our little girl Bella who is nearly 2. We live in Scotland and enjoy the outdoors, traveling, family time and exploring.

Expecting a baby with Spina bifida and Hydrocephalus can be very worrying especially if you know nothing about it. To have support from other mums who have experienced it is such a comfort which is why I got into vlogging.

A year after Bella was born, I started a youtube channel called ‘Bellaroo and Mummy’. 

The reason for this was Bella was born with Spina bifida, Hydrocephalus and Chiari 2 malformation.

When we found out neither my husband nor I knew anything about the disability or knew anyone with it. 

My initial diagnosis was at my 20 week scan. I remember it was a beautiful sunny day, I had just picked the boys up from school and nursery and headed straight to the surgery, my stomach churning with anticipation and excitement. 

We were taken through to see the sonographer and she began the scan.

We were having a lovely chat about the boys becoming big brothers and whether they wanted a brother or a sister when suddenly the sonographer went quiet, too quiet! I could feel the fear coming over me and I began to feel extremely nervous. It doesn’t help that, like my mother, I worry….ALOT so this quietness wasn’t helping.

After what felt like a lifetime, the sonographer said she was concerned about baby’s head. I could feel my eyes starting to fill up. Trying very hard to keep it together in front of the boys, I asked “In what way?”

She told me that baby’s head was the shape of a lemon which is an initial sign of Spina bifida. My heart sank and a few tears fell. I didn’t understand what that meant, was my baby was broken? What impact would that have on our baby or us? What is Spina bifida?

We were then asked to step outside while the sonographer phoned the hospital to make an appointment at the maternity hospital as soon as possible. It didn’t help that this was Friday afternoon and I couldn’t get an appointment till 9am on Monday morning. 

That weekend was the longest weekend of my life. I also had to try and explain this to my husband. The sonographer gave me a few scan pictures one of which was of baby’s head. All weekend I kept looking at that scan picture trying to understand what was going on. 

Eventually Monday morning arrived. My husband and I dropped the boys off at school and headed to the hospital. Again we had to wait to be seen, I hate waiting anyway but when you have so many fears and so many questions circling around in your head, the waiting was torture! Finally the consultant took us through, again she was very quiet whilst doing the scan and then confirmed what the sonographer had initially told us. That baby had Spina bifida and Hydrocephalus (Excess fluid on the brain).

We were taken through to a very small room to have a chat with the consultant who explained a little about Spina bifida and also a paediatric doctor who explained a little of what may happen through pregnancy and birth.

We were also given an appointment to be introduced to the paediatric Spina bifida consultant who Bella still continues to see on a regular basis. When we met with Bella’s consultant we were immediately put at ease. It was so comforting talking to someone who knew exactly what I was going through and could answer all our questions. 

He then introduced us to Sophie from ‘Spina bifida and Hydrocephalus Scotland’ who came out to our house a few times to have a chat and answer any questions we had. We found this so rewarding and to have someone so knowledgeable on hand was such a comfort. Sophie told us about a monthly group which we could attend to meet other families with Spina bifida children and who are there to help and support each family throughout their Spina bifida journey. She also told us about a ‘shunt’ (a mechanical device used to manage Hydrocephalus) and showed us both what it looks like.

I was then scanned at the hospital every 2 to 3 weeks. We was told that we were expecting a girl and after lots of name searching we decided on Bella. 

Bella had a ‘lesion’ in the base of her back which could be open or closed but unfortunately it was difficult to see on the scans. If the ‘lesion’ was open, then there would be obvious nerve damage possibly to her bladder, bowels and legs which could result in her never being able to walk. 

At every scan the consultant would look closely to see if she could tell but every time I would be told ‘We’ll just have to wait and see” this again was torture. 

At 26 weeks I was given an MRI scan to see if that would show if Bella’s back was open or closed but unfortunately she wouldn’t stay still and so could not get clear results.

We then discussed that Bella would be born at 38 weeks by C section because the Hydrocephalus was increasing the size of her head.

At my 37 week scan my consultant advised I be admitted into hospital, a week before Bella was born. I had really got myself quite worked up and was very worried not only about my baby but the whole experience and the C section itself. The stress was really starting to take it’s toll.

My pregnancies with the boys were fairly straight forward and both were water births. 

I found the birthing pool so relaxing and soothing and really felt that it helped me be more in tune with my labour but for Bella I would need to have a C section.

The consultant explained the procedure and explained that there would be alot of paediatric doctors and nurses and also neonatal specialists present at the birth to assist with Bella if needed. 

On Tuesday the 12th April 2016 I was prepped for surgery. There were so many doctors, specialists and nurses there which my consultant warned me about but I think that alone made me very emotional. 

All those people were there to help care for our baby when all I wanted was to hold her and care for her myself. Martin was in his green scrubs by my side and had been my rock throughout this journey. I had so many emotions going through my head but desperately wanted to meet our little girl. Then at 9.25am beautiful Bella was born weighing 8lbs 4.5oz and she was absolutely perfect.

I got a quick look at her and daddy got a quick cuddle before she was taken away and checked over by the paediatric doctors. 

The lesion in her back was open so a dressing had been put on and Bella would need to have surgery the next day to close it and also surgery in 7 days to fit her shunt. 

After surgery the consultant explained that the nerves to her bladder and bowels had been damaged and that everytime I changed her nappy, Bella would need to be catheterised, also the nerves to her feet had been damaged and that she has no feeling from her ankles down. This immediately worried me that Bella would never walk, once again we were told “We’ll just have to wait and see” but she has already began physiotherapy and uses a standing frame and walker to help build the strength in her legs and is doing great.

Bella then spent 2 weeks in NICU (Neonatal intesive care unit) after her back was closed and 1 week in the Children’s hospital after her shunt was fitted before we were eventually able to take her home. 

I cannot thank the staff at the maternity and Children’s hospital enough for taking such good care of our precious little girl. They really were amazing. 

2 years on and we still have regular hospital visits and appointments but Bella is doing so well and is such a strong, beautiful, happy, smiley, little fighter who loves her cuddles and who is so very loved and absolutely doted on by her 2 big brothers. 

I truly believe that hearing someone else’s journey through difficult times can help others feel like they are not alone. I think what Bella’s mom has shared will help others feel like they aren’t the only ones and that they too will come out of this smiling and happy.  This is why we share our stories…I just love this journey we are all on together!

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Published by

Kristin Marquis

Hey there! I'm Kristin. I live in the beautiful Seacoast town of Portsmouth, NH with my hubby Matt and our rescue pup Charlie. I was born with Spina Bifida and made this website in hopes that I would reach other people going through the same difficult things as I have and also to inspire others to embrace their differences and live Spina-Beautifully!