How Togolese boy’s 3,760km trip to Lacor Hospital paid off

A boy after undergoing the surgery. Photo | St Mary’s hospital Lacor 

What you need to know:

  • The condition is a rare congenital anomaly in which the patient’s bladder and urethra are exposed to the outside of the abdominal wall. His mother, aged 37, had consented to the procedure.

On April 20th, at mid-morning at St Mary’s Hospital Lacor in Gulu West Division, Gulu City in Gulu District, a skinny and frail-looking boy aged 7, from Togo is slowly and steadily wheeled into an operating theatre.

He had been diagnosed with a severe congenital malformation called Vesical Exstrophy (ectopia vesicae).

 The condition is a rare congenital anomaly in which the patient’s bladder and urethra are exposed to the outside of the abdominal wall. His mother, aged 37, had consented to the procedure.

We have withheld the names of mother and boy for legal reasons

After carefully covering him and putting him to sleep, the mother, a Muslim-faithful, resident of Kpémé Village, an hour away from the capital Lomè, stares at him briefly through the transparent glass window of the theatre as tears rolled down her cheeks before quietly walking back to the ward.

She is under pressure, and the son will have to undergo multiple surgical procedures to correct his malformed genitals. She is not sure of the outcomes of the 12-hour surgical procedure. She bore her son in December 2015 with the condition.

The procedure is to be undertaken by a team of Italian surgeons under the Surgery for Children, an Italian NGO that organises annual medical camps for children at the hospital.

The camp kicked off on April 14 and ended on April 28. The pair had been booked at the hospital on April 13, for the procedure upon travelling for more than 3,760km from Togo.

The treatment involves 2 main surgical steps, reconstruction of the bladder, urethra, and penis, and reconstruction of the bladder neck, as well as any additional adaptive procedures to control urinary incontinence.

In optimal conditions, it would be preferable to complete the surgical steps within the first 3 to 4 years of life, but the therapeutic path is influenced by various factors and it is difficult to give certainty about the final result.

The X-ray and scans done showed that the boy’s bladder plate was too small and worsened by a scar from the previous operation, and the scrotum is hypoplastic, this means urinary incontinence is absolute and the distance between the pubic bones on X-ray is 8 cm.

The surgical intervention, which took surgeons 12 hours inside the theatre and another four days for the boy inside the Intensive Care Unit, involved the bladder, penis, and urethra reconstruction including a reconstruction of the bladder neck.

We interviewed Dr Isaac Okello, whose role during the procedure was to make sure all the patients who came for the surgical camp are admitted, tested and a theatre list is made, but also ensure that every patient who is wheeled inside the theatre walks out safe .

Tough procedure

In his explainer, the boy was born with a distinctive disorder in which the abdominal muscle on the anterior wall of his belly was absent with an amphibious genital (private parts with male and female traits).

If not corrected, the outcome may be very disastrous. Dr Okello says: “If the genitalia is not corrected, they may never reproduce then, the bladder once left that way, and there would be serious problems, specifically issues to do with a failure of their kidneys.”

Since all the genetic tests proved he was a male, the team then gets on to reconstructing his genitals to make his private parts appear like that of a male.

For patients in such conditions whom medical specialists are not very sure about their sex (whether they are male or female), there are procedures undertaken by a physical view, laparoscopy, and others, according to Dr Okello.

In his case, while his physical view confused the team, they went on to conduct a laparoscopy (an operation performed in the abdomen or pelvis during which they found it absent.

That examination looks through the pelvis to see if there is a uterus, then most likely it is a female and if it is absent, then it is likely a male.

Outside the genitals, Dr Okello said they also checked for his testes and found it but finally went to a genetic procedure called Karyotyping.

“Further to confirm, we conducted an analysis called Karyotyping, a technical genetics analysis that identifies the chromosomes XY and XX, while XX female XY is male. ”

The boy now has a penis, though it may not be as big as it is required for his age, but with time, it will grow, his two testes are also now back into position. The procedure also does not have any limitations in terms of activities in life once he grows up.

However, the specialists have to wait for another seven years and subject the boy to another procedure to find out if indeed his manhood is perfect. Since he is seven now, the sexual activity of a human is ideally realised or at peak once they reach puberty.

This implies that he has to be approximately 14 years old to be introduced to a few medicines to boost the male hormones and better his sexual productivity in case they are low.

Once her son is finally wheeled out of the theatre with a beam of a smile flashed at her by Dr Okello, she quickly looks up at the sky with a hint of a smile: Inshallàh !!, while she draws her hijab to mop those tears that rolled her cheeks.

The boy’s condition is one of the multiple tough procedures that the medics undertook. We also lea that during the camp, up to 95 percent of the surgeries done were surprisingly very complex meaning that they required super-specialists to perform them.

For example, out of the 70 children operated on, medical records this newspaper saw indicated that they suffered from Hypospadias, a condition in which the urethral opening on the penis is not at its tip but under or joined to the scrotum.

Whereas the boy could be discharged soon, Dr Okello explained that a lack of equipment and manpower backup continues to limit their efforts in handling such conditions at the hospital.

Dr Cyprian Opira, the hospital’s executive director, said poor pay for health workers occasioned by the dwindling donor support, which the hospital depends on, and the lack of specialised equipment curtails efforts to offer their best to humanity.

Children operated

The activities of the association are part of maternal and child health, global health, environmental care and international cooperation projects. More than 70 children were operated with hypospadias, anorectal malformations, Hirsch-sprung, bladder stones, and abdominal masses.

The mission also involved the training of Ugandan and Italian doctors in which for the first time, 4 laparoscopies were performed, of which one was operative for abdominal testicles.