Maryam's Story - Awareness Week 2017

Maryam sits cheerfully on her mum’s lap, chewing the wooden jigsaw piece that mum Natalia has just given her. The piece is soon on the floor… and the next one... Maryam is bright and bonny, the picture of health.  You would never know that she has a complex set of health problems that will affect her for the rest of her life.

Maryam was born in 2016, now a year old. Maryam has spina bifida and hydrocephalus.

Mum Natalia tells the story:

“I was diagnosed at 20 weeks. The doctor told me that Maryam had the full spectrum of problems that children with spina bifida can face. He said the baby could die in the womb. I should think about ending the pregnancy…

“I was in shock. I felt all alone, as if someone had died.

“There was no-one on hand to guide me. I was given an information leaflet which had some details about Shine. I didn’t contact Shine right away. I was a bit scared; it was all so uncertain. It takes time for it to sink in.

“It would have helped to have someone there at diagnosis. You’ve just been diagnosed, so much is going on, and there was pressure to stop the pregnancy. Parents may be scared… It would have helped to meet other mums at the time, to see other children with similar problems.

“If I’d seen someone like Maryam – or pictures of other children like her – that would have really helped. I remember seeing another couple who had just been diagnosed and were in tears. I’d love to go back to the clinic to show them Maryam now.

Shine’s early intervention made a difference

“When we met Sharon, the Shine support worker, things began to change. Sharon visited us after Maryam was born. I asked about support groups, as much for the children as for us, so they could meet other children like Maryam. We were still taking it all in.

“Then we went to Shine’s family event. That was a turning point.

“It was really well organised. There were activities for the children, and a swimming pool, with plenty of time for the children with slower mobility to get in and out and have fun. There were education sessions for parents, on child development, how the conditions affect the children, and showing that they can do really well.

“The boys were able to meet other children with spina bifida and hydrocephalus, which helped to prepare them, to show them it was ok. It gave an idea of how Maryam could be; she might use a wheelchair and a walking frame, that’s ok.

“For us parents we’ve seen what our child could be like… It was good to meet other parents and share ideas – how do you deal with this or that? What creams, catheters and suppliers to use or not…Little things make a big difference - knowing it’s going to be ok.

“We met with Sharon and Robin, the health adviser. They explained everything, including how to use a catheter. It was a lot to take in but it calmed me down: yes, it can be tough but less than I think… It gave a bit of confidence in an uncertain future.

“The journey from diagnosis to the Shine event made a big difference.

How does SBH affect Maryam?

“Maryam is not able to walk. She is crawling but not properly; she pulls herself mostly with her arms. Now she has little leg splints, to help her with standing, and a standing frame which helps her to stand and play. I also do stretches on her legs everyday, to keep the muscle tone good.

“Maryam has a neuropathic bladder, so doesn’t feel when her bladder is full and it doesn’t empty properly. She needs to be catheterised and given medication three times a day.

“Maryam also has hydrocephalus and had a shunt fitted when she was one month old. The shunt is working well, but they can sometimes block so we have regular checks with the neuro team. We go to Queen’s Medical Centre Nottingham - the A&E neuro teams and nurses have been fantastic.

“Whenever she gets a temperature we have to check with the neurology team that the shunt is not infected. It often means trips to A&E. In January Maryam had tonsillitis, but then developed a urinary tract infection. She got so poorly. There is always the risk of infection. We have to work hard to keep her well.

“Hydro can affect her general development – there is a slight delay in development, and I have to do more play with Maryam to stimulate her development. I use bright toys, more play time and interaction to make sure she’s not behind.

“I can feel a bit down at times. Maryam needs a lot of care, catheterisation, medication - but I’m not scared or upset. Through Shine I know that other parents are coping as well. It helps to have that emotional support, to cope with everything, to see that other parents and children are coping. Her brothers love her to bits and are very gentle with her.

Help to access support

Natalie is not new to finding her way around the system, as she used to work for the city council, giving bilingual support for the New Link service for anyone with questions about local services and schools. But finding disability support can be complicated.

“Sharon helped us to navigate the health system and to get some benefits. DLA is a huge form, you need to know how to complete it. We didn’t get it the first time, we had to appeal. Sharon guided us on what to write; things to include, and we were able to make the application ourselves then. We were successful the second time but initially on the lowest scale. As Maryam has started cathetorisation she now gets the middle allowance, which also means that we can apply for carers’ allowance. That would enable me to stay at home to look after Maryam full time – I wouldn’t need to go back to work.

The future…?

“I am hoping that Maryam will grow up to be a confident person, regardless of her disability. With the support of Shine I feel that will happen, for sure. If she needs any other help I know we can access Shine for support or they will help us find other support. That gives confidence.

“I would love to support other members now. I know how hard it is. If I’d seen a child like Maryam while I was pregnant, it would have helped. No matter how hard it is at the moment there will be an end to it; things can get better. Never lose hope for a better future.”