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Russian baby with extremely rare condition given a second chance at life in London hospital

A Russian baby, Vitaly, has been given a new lease of life after being treated for an extremely rare condition called Prune Belly Syndrome at Great Ormond Street Hospital for Children in London (GOSH).

Vitaly suffers from an extremely rare condition called Prune Belly Syndrome and has been in and out of hospital since birth. Vitaly’s parents first knew something was wrong at a routine ultrasound in Russia at 13 weeks, where doctors originally diagnosed with Vitaly with cystitis. However, when Vitaly was born, it was evident that his condition was a lot more serious than was first expected.

Vitaly was diagnosed with a rare condition called Prune Belly Syndrome, a condition that affects around 1 in 40,000 births. Professor Imran Mushtaq, Consultant Paediatric Urologist at GOSH, who treated Vitaly explains that Prune Belly Syndrome is a very rare condition. “The muscle of the tummy (the abdominal wall) is very thin and children also have very weak, very abnormal and often dilated kidneys. The bladder is also very distended and doesn’t work very well. The condition has three main symptoms; abnormal urinary syndrome, abnormal abdominal wall and their testicles are inside the tummy and have not descended. And that’s why some people call it the Triad Syndrome,” explains Professor Mushtaq.

As the condition was so rare, doctors in Russia were unable to provide the expertise necessary to help Vitaly, so his mother Lidia started to research for treatment. In search of expert treatment to help him, his family travelled to Great Ormond Street Hospital for Children (GOSH) in London. 

“I tried to get in touch with other mothers who had children with similar conditions on the internet, and that’s how I found out about Anglomedical and Professor Mushtaq at GOSH,” Lidia explains. Before arriving at GOSH, the family worked with Anglomedical, a medical concierge based in the UK, who helped them liaise with GOSH and prepare to come to the UK.

“Initially when Vitaly arrived he was in a very poor condition,” Professor Mushtaq says. “He was very weak and had a poor kidney situation. And that’s where Dr Stephen Marks has been amazing. He has worked really hard to improve the nutritional status, to improve the kidney function and he got us to the stage where we could we could carry out a simple procedure.”

Dr Marks, Consultant Paediatric Nephrologist at GOSH, was the lead medical physician and kidney specialist overseeing Vitaly’s care. “I instituted medical management to improve his electrolyte imbalance with additional supplements, phosphate binders, activated vitamin D and treatment of his anaemic of chronic disease,” Dr Marks explains. “I coordinated the multidisciplinary team input with dietetic, urology, general surgery, dermatology and respiratory reviews.”

Vitaly was given a gastrostomy to improve his nutritional input and growth at GOSH. Professor Mushtaq also performed a vesicostomy operation on Vitaly’s bladder to make an opening in the bladder so the urine drains straight out into the nappy. Since these operations, his condition has improved significantly.

“Our doctors are like gods to us, because they have done everything for our child. They have saved the life of our child,” Vitaly’s dad explains.

“Everyone was telling us how Professor Mushtaq treats all his patients like they are his own children before we came,” Lidia explains. “When we arrived, we saw how true that was; it’s how he communicates with Vitaly, how he holds him, how they have a laugh together. There is so much warmth and so much love in what he does, so it’s not only this amazing professional world-class expertise but it’s also his relationship which makes parents so calm and comfortable in this difficult situation. Thank you from all the parents in Russia you’ve helped.”   

Vitaly will have to return to GOSH regularly for check-ups and will soon need a kidney transplant, as well as further surgery to reconstruct the bladder.

“We treat children from all over the world with rare urological and kidney conditions. I consider it our responsibility to use our expertise to try our best to benefit every child not only in the UK but around the world,” Professor Mushtaq concludes.

Urology and Nephrology departments at GOSH

The Urology department provides a specialist service for the diagnosis and management of children with simple and complex urological disorders. The department has an international reputation for clinical excellence and has pioneered minimally invasive techniques in paediatric urology. GOSH is the only institution in the UK that manages children with bladder exstrophy, for which the hospital has exceptional expertise and offers cutting-edge treatment.

The Renal Unit provides a comprehensive diagnostic and treatment service for children with kidney disorders. It is the largest paediatric renal unit in the UK and one of the largest paediatric renal transplantation centres in the world. As well as renal replacement therapy (RRT), the department covers every other aspect of paediatric nephrology with special expertise in congenital renal anomalies, nephrotic syndrome, hypertension, vasculitis, tubular, metabolic and stone disorders.

Professor Imran Mushtaq

Professor Imran Mushtaq, Consultant Paediatric Urologist at Great Ormond Street Hospital (GOSH) and Senior Lecturer at the Institute of Child Health, London, started his career as a Paediatric Urologist in 2001. He pioneered minimally invasive urological surgery in London and is widely regarded as one of the leading laparoscopic surgeons in the UK, with expertise in the techniques of nephrectomy, partial nephrectomy, adrenalectomy, pyeloplasty and robotic surgery. Professor Mushtaq has a specialist interest in reconstructive urology, comprising hypospadias, disorders of sex development, neuropathic bladder and bladder exstrophy and epispadias.

Dr Stephen Marks

Dr Marks Reader and Consultant in Paediatric Nephrology and Clinical Lead for Renal Transplantation at GOSH. He works in the nephrology department and his areas of expertise include renal transplantation, systemic lupus erythematosus, vasculitis and hypertension.

About AngloMedical

AngloMedical are the market leader in organising world class medical treatment for expats living in the UK and overseas clients from Russia, Ukraine, Kazakhstan, Middle East and China. We provide consulting, booking, interpreting and assistance with visas and accommodation. We arrange consultations and treatment with top medical professionals in best private hospitals in London. We specialise in helping patients who expect the highest standards in personalised healthcare and state-of-the-art diagnostic and medical technology.

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