1 December 2022

Rare condition diagnosed by hospital team

Five-year-old Harvey-Lee was diagnosed with a rare bone condition at Southampton Children’s Hospital. Now near the end of his treatment following a bone graft, he is one of only 200 cases having been reported. Mum, Jessica, tells us more:

When Harvey-Lee was 10 months old, I found a lump on his clavicle (collarbone) and immediately called my local GP surgery in Bournemouth.

Our GP surgery diagnosed him as having a broken clavicle, and we were sent to our local hospital for an x-ray which confirmed the diagnosis of a clavicle break which was calcifying.

I work in cardiac surgical theatres and am currently working on my nursing association degree, so I knew that something wasn’t quite right with the diagnosis.

After pressing for a second opinion, we were referred to Mr Wadia at Southampton Children’s Hospital where Harvey-Lee was diagnosed with Pseudarthrosis of the Clavicle.”

This is a rare disorder, usually diagnosed at birth, where the clavicle bone fails to develop properly. This causes mobility complications over time.

There have only been 200 other reported cases, with the cause unknown.

Jessica continues, “He underwent numerous x-rays and CT scans, along with multiple consultations about how best to treat Harvey-Lee’s condition.

On 8 September 2022, he underwent an open reduction internal fixation operation. This is where bone was removed from his lower leg to fill the space in his collarbone. This was then fixed together with surgical plates and screws to allow it to knit back together properly.

While he stayed in hospital overnight after the surgery, he was doing so well that we were discharged the following day with just a dressing on his leg and arm, with an arm sling to maintain the natural positioning of his clavicle while it healed.

Two weeks post-op, and we’ve just had the dressings removed. The areas have healed so well, and the tidiness and effort that has gone into the wound closure is just amazing. It is truly a reflection of the hard work and dedication of the theatre team!

Following Harvey-Lee’s treatment, I would never want my son treated anywhere else other than at Southampton Children’s Hospital.

I will forever be grateful that Mr Wadia did not see me as an over reactive mother and instead listened to my concerns. This meant that Harvey-Lee was properly diagnosed, and something could be done to change his life.

All the hospital staff involved in Harvey-Lee’s care were amazing. From the staff at pre-assessment all the way through to the ward staff and physiotherapists. Nothing was ever too much trouble.

What was second to none was their communication with all children of all ages and abilities. It was outstanding. Every staff member I had the pleasure of meeting was so polite, kind, empathetic, and also had a sense of humour which helped my anxiety.

Harvey-Lee is my whole world after his father passed away suddenly aged 34, just three days after Harvey-Lee’s first birthday. The hospital helped me to cope with Harvey-Lee’s diagnosis, and he is now also under the care of the paediatric cardiac (Ocean) ward to monitor his heart.

Southampton Children’s Hospital does not get enough recognition for the care and support they deliver to patients. It is an absolutely outstanding hospital with incredible staff!”

 

Making patients smile this Christmas

Help us sprinkle smiles, laughter, and happiness across our hospital this Christmas. You can help make it happen!

Christmas should be about spending special time with family at home, seeing children getting excited, watching them unwrap presents, and spending the big day celebrating. Sadly, for many children in hospital, this just won’t happen.

Festive nurses in a bauble

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