A mother has told of her horror at discovering her eight-year-old son has a hidden vagina due to a birth defect.
Leanne Owen, 40, was heartbroken when her son Harry was born with three holes in his heart, a twisted spinal cord and kidney problems.
He also had no anus and no urethra – the hole in the tip of the penis through which men expel urine.
As he grew his mother Ms Owen noticed his penis wasn’t growing and his genitals looked abnormal – and so she searched for a diagnosis.
Last year doctors discovered Harry had bifid scrotum with features associated with female genitalia – which means he has a cleft in his scrotum which causes two folds of skin which look like a female’s labia.
Leanne Owen, 40, has told of her horror at discovering her eight-year-old son Harry has a hidden vagina due to a rare birth defect
Harry was born with three holes in his heart, a twisted spinal cord and kidney problems. He also had no anus and no urethra and had more than 12 operations as a toddler
Ms Owen, who was pregnant at the time, said the shock diagnosis caused her to miscarry her baby.
She said: ‘When I went in for my first pregnancy scan, they found blood in my urine and I was told that I had lost my baby at six weeks.
‘I was devastated and when I went back and tracked the weeks back, that would have made it to around May 18 last year – which was the same week that I was told that Harry had a vagina.
‘I knew there was something internally that was wrong with Harry as well as the other defects that were picked when he was born.
‘I’ve spent the months since joining Facebook groups, support groups and asking experts around the world to try and find out what was wrong with Harry.’
Harry’s defects were picked up at Blackpool Victoria Hospital, where he was born, but he was quickly moved to Manchester Children’s Hospital.
He underwent more than 12 operations including being fitted with a stoma and a colostomy bag.
But Ms Owen has complained to the Manchester hospital as she says Harry’s stoma was placed on his hip, causing him to limp.
HOW CAN A BOY HAVE A HIDDEN VAGINA?
When a boy is developing, his scrotum is split into two halves and the penis develops between these two ‘half-scrotums’.
The penis starts out pointing down towards the boy’s feet, with the opening for urine quite close to the bottom.
During development the penis gets bigger, straightens out and starts pointing upwards.
The urethra starts to get longer and its opening moves up the penis until it reaches its tip.
As the urethra gets longer the two halves of the scrotum move together and join in the middle creating an obvious ‘join line’ called by doctors ‘the midline raphe’.
But for boys with bifid scrotum, this process is not complete.
The urethra opens at the base of the penis and the scrotum is often split in two.
Harry had a sever form in which the split scrotum had left two flaps of skin which resembled a female’s vagina.
Surgery is normally recommended to correct bifida scrotum.
Source: DSD Families
It was also in a loop and it leaked for five years – and so she asked to be referred to Alder Hey Children’s Hospital in Liverpool, where he had an operation to correct it.
After noticing her son’s penis wasn’t growing and that his genitals looked abnormal, Harry was diagnosed with bifid scrotum and urethral duplication in May 2015.
This is when the urethra opens at the base of the penis and the scrotum is often split in two.
Harry also had two flaps of skin which resembled a female’s vagina due to the condition.
After these defects were discovered, doctors revealed Harry actually had VACTERL association.
This is an acronym standing for ‘vertebral, anal, cardio, tracheo-esophageal, renal, limb’ – the name given tothe occurence of multiple birth defects which are thought to be related.
Currently, it is not known which specific genetic or chromosomal defect causes VACTERL association – although related issues are seen with chromosomal defects such as Trisomy 18.
Initially, Ms Owen was relieved to find out what was wrong with her son after searching for so long.
She said: ‘When I found out that it was vacterl association, I just broke down because it was such a huge breakthrough and now we can get the treatment to get him on the right path in life
However, this soon turned to fear about his future – so much so she believes the worrying caused her to miscarry.
Now, Ms Owen feels angry Harry wasn’t diagnosed at birth.
She says many of Harry’s defects were not picked up through ultrasound scans at Blackpool Victoria Hospital before he was born – meaning he is now left in agony every day – which she feels could have been prevented.
Ms Owen is angry as she claims Harry’s birth defects were not picked up on ultrasound scans at Blackpool Hospital, where he was born
Harry had a stoma – where the opening of the bowel is diverted to outside his body – and a colostomy bag fitted as a toddler
Ms Owen said she hates having to take Harry to hospital to have operations as he hates it and ahs to be held down. But surgery is the usual treatment for bifid scrotum
Ms Owen said: ‘I feel frustrated because if this had been picked up when Harry was a baby, he wouldn’t have to be in the pain that he is now.
‘It is horrible when Harry is to go in for an operation because he hates it and we have to physically hold him down because it is the only way that we can get him ready for the operation.
He added:’It breaks my heart as it takes eight of us to get him down there because he is seven stone, but is for his own good.
‘Harry has always got a smile on his face, which is amazing when you think of all that he has been through.
‘Harry has always got a smile on his face, which is amazing when you think of all that he has been through,’ Ms Owen said, pictured with her son Harry and daughter Millie, 16
‘If you looked at him, you would never guess that there was anything wrong with him because he is such a happy little boy who loves to sing and dance and everybody in the local area knows him like a celebrity.’
A spokesman for Manchester Children’s Hospital said: ‘We are sorry to hear that Harry’s family have concerns about his care. We are contacting the family to reassure them that we will look into this further.
‘We would like to reassure Harry’s family that we are committed to providing an excellent standard of patient care and will ensure that their concerns are investigated fully.’
A Blackpool Victoria Hospital spokesman said: ‘We are always sorry to hear about any issues involving patients but we cannot comment on individual cases due to patient confidentiality.
‘We have investigated the family’s concerns and responded to them directly.’