27 October 2023

Rare condition diagnosed by hospital team

Five-year-old Harvey-Lee was diagnosed with a rare bone condition at Southampton Children’s Hospital. Now at 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 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, however the ward is dated. The parents room was very small and crowded especially when you see how many parents are on that ward. During my stay, I slept on the side of Harvey-Lee’s hospital bed as there were no additional fold-out beds for me to use as there were only a certain amount of these beds available. The ward bay layout is also quite small and does not allow much room for any hospital equipment without having to use some of the space from the next bay.

We are proud to support the hospital charity appeal to refurbish the ward so it matches the world-class care given by the staff.”

Be part of something

The Southampton Children’s trauma and orthopaedic ward on G3 is a special place. But we need your help to refurbish it and make it even more special.

With your support, we aim to raise £1.64 million to make sure it is fit for the amazing children we treat, their wonderful families, and our brilliant staff who care for them.

We see our trauma and orthopaedic ward as a team, and to keep ours running at a world class level, we need another member. You.

So, are you ready to join the team?

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