Julie's scoliosis journey

When Julie was diagnosed with scoliosis at the age of seven, her case was already more complex than most.
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Julie's story

Diagnosed with cerebral palsy as a young child, Julie faced a greater risk of losing her mobility if her scoliosis was left untreated. But as a child with epilepsy and learning difficulties, unable to communicate verbally and having to use a gastronomy feeding tube for eating and drinking, there were clearly many other possible complications to take into account before Julie could be treated for her scoliosis and if surgery would subsequently be required.

Meeting Mr Lucas

After initially seeing another consultant, Julie and her family first met Mr Jonathan Lucas at Evelina London Children's Hospital.

Julie's mum Nicola says, "we really liked Mr Lucas, and he had an excellent reputation as a surgeon. He monitored Julie's spine with a bracing program for a number of years, before deciding the time was right for surgery. Although it was a time of apprehension for us, there was also a sense of relief, as it was clear that Julie's spine couldn't continue to be allowed to deteriorate any further, as the brace was not able to control the progression of her scoliosis."

Julie's parents decided to proceed with surgery at the Evelina London Children's Hospital where Mr Lucas is based in the NHS. The procedure was due to be carried out at the Evelina in March 2020. However, when this was postponed due to the COVID-19 pandemic, they contacted Mr Lucas who, as they had access to private healthcare cover, was able to do the surgery that summer at The Portland Hospital, where he runs The Portland Scoliosis and Spinal Surgery Centre.

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The pre-operative assessment

Julie’s surgery date was confirmed for July and Mr Lucas’ secretary arranged for the family to visit for a pre-operative assessment.

Nicola remembers, “we met the nursing team and physios who were very friendly and told us about what would happen before, during and after surgery. The dietitian also discussed what equipment and meals The Portland could provide for Julie and what we should bring with us to hospital. The whole experience was very reassuring.”

Arriving at The Portland

Julie and Nicola arrived the evening prior to surgery, and after settling into their private room this period was understandably quite worrying for Nicola, although both she and Julie were made to feel as comfortable as possible. “It was hard as I wasn’t able to prepare Julie mentally or explain to her about the surgery, although the nurses were brilliant and always on hand when we needed some help or meals delivered to the room.”

The day of surgery - going into theatre

Julie was taken down to theatre at midday and given a pre-med to help calm her before the operation, where Nicola stayed with her until she was asleep.

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After surgery

As soon as Julie’s operation had finished, Mr Lucas went straight to Nicola to explain the next steps. “He was brilliant and very reassuring. He explained that Julie would be intubated for 24 hours to ensure she remained still, and Mr Lucas visited Julie every day that she was in the hospital, in the morning and most evenings.”

Julie also experienced a partial collapse of one of her lungs – common in young patients with additional health issues due to their cerebral palsy after major corrective scoliosis surgery. This meant that she stayed in The Portland’s Paediatric Intensive Care Unit (PICU) for five days to recover, where she was continuously monitored and cared for by the physiotherapists and occupational therapists. Julie made a very quick recovery, walked very well and was able to be discharged four days later.

Despite this period of uncertainty, Nicola knew Julie was in the best hands. “The PICU team were brilliant and the level of care Julie received from everyone was amazing.”

Going home and Julie's aftercare

Before the family went home, The Portland physios and nurses provided Julie’s private physio with in-depth handover notes and a full exercise plan. The clinical nurse specialist also advised Nicola and her husband on how to apply Julie’s dressings.

The ongoing support left Nicola feeling very thankful. “They were in touch throughout and often checked in on us after we’d left to make sure everything was okay. We really felt we’d got to know some of the team well during those few days in hospital.”

Julie came back to The Portland for a follow-up appointment six weeks after the surgery, and then again in early December for X-rays just to confirm that everything was satisfactory.

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Looking forward to the future

Julie’s surgery was very complex, especially given her additional disabilities and concurrent medical problems. She has made an excellent recovery and both her parents are incredibly happy with the results, particularly with the fact that she’s now walking far better than she was able to prior to the surgery due to her much straighter spine.

Nicola says, “Julie is doing really well. Her spine isn’t completely straight, but because she is already disabled, she needed to be able to maintain her function. The scar healed nicely, and her recovery has been really good ever since she came out of hospital – she is walking as much as she was before the operation.”

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This content is intended for general information only and does not replace the need for personal advice from a qualified health professional.