Nessa’s story: Taking the journey together as a family
Nessa hasn’t even celebrated her 3rd birthday yet but already she’s undergone major surgery.
Nessa and her family live in Co Armagh, Northern Ireland. Her parents were given news at her 20week scan that she had hydrocephalus which is a build-up of fluid on the brain. At only two days old she required to have a shunt fitted which at first helped to relieve the pressure built up in her head.
Mum Eleanor explains: “We weren’t sure what lay ahead at this point as we were told to go home and that Nessa wouldn’t be able to see. A check-up showed the shunt wasn’t working properly and her skull looked an unusual shape. A new shunt was fitted but we needed answers for our daughter.
“We were advised to speak to a specialist craniofacial unit at Alder Hey and even though it was a hospital quite far away from us in Liverpool we thought perhaps they could provide more information.
“On our first visit we were met by surgeon Christian Duncan and a multidisciplinary team who all made our family feel extremely welcome. One of the nurse specialists Colette Turnock has been a rock to our family from day one.
“They approached the situation with care and sensitivity before arranging for scans to investigate further. With a more advanced system at Alder Hey, they were able to see what treatment was needed. She needed detailed MR scanning and construction of a stereolithographic model which gave a 3D model of her head.
“They scanned her head in detail and Christian explained that he would do the operation to correct the shape of her skull but would only guarantee a cosmetic outcome with the shape only. He couldn’t predict what developmental improvements Nessa would show. They also made sure we fully understood the risks and difficulties involved. Once we got into a routine the travelling was made easier and the team were mindful of our other children when arranging appointments.
“Colette became our liaison and I spoke to her on the phone every couple of weeks for advice and reassurance. She’s been fantastic and has helped me to feel calmer throughout. She appreciated that we were hoping for the surgery to take place in 2014 so we could begin a fresh in 2015 and thankfully we were allocated a slot in December.
“I wasn’t sure how we’d organise family like during the treatment but Colette encouraged me to bring the other girls and helped to organise accommodation. It was the best decision and I really think it helped a serious situation better by taking this journey together as a family.
“As well as having our family support we had the support from staff on the ward. They’d go out of their way to come and chat to us about anything, whatever was needed to help distract us. Denise was a pleasure and Pat Devine the Play Specialist was amazing. She had my other two girls as her assistants in her play room. This really helped with their distraction but helped them to be part of Nessa’s experience at Alder Hey with her.
“When we saw Christian the day before the surgery he showed us the skull model and I wished him luck. He replied ‘It’s not down to good luck, I’ve been practising in my garage’. Even away from the hospital his priority was young patients which gave me a lot of trust. All of the team were so professional. Her anaesthetist Richard, spent two hours on the phone to me explaining the whole process, how it’s set up, the drips used and how Nessa would look like when she was brought back to us.
“She was in theatre all day and I saw the surgical team looking like they’d given everything in there. We knew to expect Nessa to look swollen and completely bandaged but she still looked surprisingly good. I remember her turning point was with during a music therapy lesson in the days following the surgery. Pat arranged for Georgina, the music therapist to come and visit all the children on the ward. We were delighted to see Nessa clapping and enjoying the music. Then the Liverpool football team made their Christmas visit to the ward in which she took great delight in having them perform jingle bells with a guitar for her own amusement.
“Due to the distance from Alder Hey, Christian requested we stayed a little longer. When it came for us to leave, I was quite nervous as we’d be so well looked after it was now down to us as parents but we worked well as a team.”
The surgery was followed up with a CT scan which showed how the brain had successfully moved into the space they had created. The surgical team have been delighted with her progress and another scan has showed there aren’t any soft spots. Nessa has since been discharged and has been making great progress at home.
“She’s been standing with her bum leaning against the wall”, mum explains. “You can tell she’s making the effort to communicate and move. Everything is slow but she’s gradually ticking the boxes and we’re very proud of her and her sisters who have been brilliant with her.
“If any other families are considering visiting the craniofacial team for treatment at Alder Hey I’d say, go for it. The care we received was second to none and the whole holistic family approach was great. Don’t be afraid. We were always treated with respect and they instilled great confidence in their ability.
“Thanks to the team at Alder Hey, I know the future holds great things for our daughter.”