Specialist complex urology surgery

Tom's story - December 7, 2021
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Tom was born with complex urological and colorectal issues, due to his urethra and anus not forming properly. He was diagnosed with an imperforate anus (a blocked or missing anus) and hypospadias, which is where the opening of the urethra (the tube that carries urine out of the body) isn’t located at the tip of the penis.

Multiple surgeries

At just four days old, Tom had surgery to remove a perineal mass and to create a stoma (an opening in the abdomen to which a colostomy bag is fitted). In 2019, when he was eight months old, he underwent Posterior Sagittal Anorectoplasty (PSARP) surgery to connect his bowel and anus. Three months later, he was ready to have his stoma reversed.

A rare condition

Finding the right surgeon to repair Tom’s hypospadias was more complicated. Although mild hypospadias is fairly common, Tom was born with an extremely rare form of the condition, called perineal hypospadias. This is where the urethral opening is located along the centre of the scrotum. It’s very unusual for paediatric urologists see a case as complex as Tom’s.

As Tom’s family live in Dublin, his mum, Claire, spoke to the top urologists in Ireland about the surgery he needed. She was told that if the operation was not carried out by a consultant highly experienced in perineal hypospadias repair, complications and the need for further surgeries would be more likely. Perineal hypospadias repair surgery is extremely difficult to correct if not successful the first time, which can lead to a child going through numerous failed surgeries.

Finding the right expertise

Claire wanted to do everything she could to make sure Tom had the best chance of success. She began researching world-class urology experts, and contacted paediatric urologists in Germany, America and the UK. Claire got in touch with Professor Peter Cuckow, Consultant Paediatric Urologist at The Portland Hospital, who routinely treats patients with the most severe cases of hypospadias.

Professor Cuckow explained that Tom’s condition was so complex that it would require two separate surgeries. Claire was reassured by Professor Cuckow’s expert knowledge and experience, and felt that she could put her trust in him to carry out the specialist surgery Tom needed.

Preparing for surgery

When the family travelled to London for Tom’s first operation , they were impressed by the kindness and the professionalism of the staff at The Portland Hospital.

Claire says, “Everything was taken care of from the moment we walked through the door. We didn’t have to worry about the basics, like finding somewhere to stay. All we had to think about was Tom, which made a huge difference to our peace of mind.”

The level of care Professor Cuckow provided was exceptional, and, despite the complexity of Tom’s case, his first hypospadias repair surgery was a success. Claire says, “Professor Cuckow was very professional and caring throughout the entire process.

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A supportive environment

The nursing team at The Portland Hospital went out of their way to make Tom’s stay as comfortable as possible. Claire says, “The whole team were very attentive. They brought in the type of toys Tom likes and made sure he always had plenty of them around to keep him entertained.

Although the rules and regulations around visiting the hospital had changed due to COVID-19 by the time Tom came back for his second surgery, the family felt completely safe.

Going the extra mile

Nasra Ahmed, a Paediatric Urology Clinical Nurse Specialist at The Portland Hospital, took a personal interest in Tom, and went above and beyond to make sure his family had all the help they needed during and after their stay.

Nasra kept in touch with Claire after Tom had gone home. Claire says, “I was nervous that surgery would be in a different country and what support would be like afterwards, however the follow-up care with Nasra was exceptional. We stayed in touch via WhatsApp and I was able to share photos and my concerns, and she always responded and helped put my mind at ease.

A successful outcome

Thanks to Professor Cuckow’s expertise, and the care provided by the whole urology team at The Portland Hospital, Tom doesn’t require any further surgeries, and will go on to lead a healthy and normal life.

Claire says, “I wouldn't hesitate to recommended Prof Cuckow, Nasra and the team at The Portland. They really helped me know Tom was in safe and caring hands.

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