3,700km, 11hrs of surgery: Affo’s quest for a cure

3,700km, 11hrs of surgery: Affo’s quest for a cure

In the days leading up to this year’s paediatric surgical camp organised by Surgery for Children (SFC), an Italian non-profit organisation that has been coming to Lacor for the past 12 years, St. Mary’s Hospital Lacor was teeming with lots of activities and the influx of visitors, most of whom women and children. Among the many visitors was Affo Morow, a 7-year-old boy from Togo, a West African nation on the Gulf of Guinea accompanied by his mother Faouzia.

Faouzia and Sister Rose

Faouzia has never moved from her village, at most she had been to Lomè. She speaks only French and has a great responsibility on her shoulders; however, she is accompanied by a great mother’s strength determined to help her son to heal in every way possible. They moved by asking for information through mobile phone translations and managed to arrive without problems at Lacor Hospital where they are greeted by Sister Rose who takes them under her protective wing. In the following days, Faouzia would tell that she was very surprised by the kindness and humanity of the health personnel of the hospital, so different from that of Togo.

Born to a family of five in 2015, Affo had a serious congenital malformation of the bladder and genitals (called “Vesical Exstrophy”) a rare condition which occurs 1 in 60,000 births. It is immediately evident at birth since the bladder and urethra are exposed to the outside of the abdominal wall, seriously compromising the quality of life.

The malformation is treated with multiple surgical interventions that involve 3 main steps: reconstruction of the bladder, reconstruction of the urethra and penis and reconstruction of the bladder neck, with further adaptive procedures that can last several years.

Affo had already had an unsuccessful operation in the first months of his life in Togo, and the local doctors advised him to have his son operated abroad, but the family couldn’t afford. The father drives motorcycle taxis and the mother does not work. They have 3 other children to take care of.

Faouzia, recounts that she changed Affo’s diapers about five times a day due to urinary incontinence; an expenditure with which she is helped only minimally by an aunt who sends her money, while the great part is her own money. Due to the economic situation in this country, most of the children in this condition are wrapped in rags, which are not very absorbent and, in the long run, smelly, which contribute to creating conditions of social hardships.

The Togolese community in Europe tried to help by trying to have him operated on in France and Belgium, but finding an expert surgeon and covering the costs of the trip was a challenge. An Italian association offered a partial coverage of the costs for an operation in Switzerland in 2019 but the arrival of the Covid-19 pandemic blocked all hopes.

The turning point for Affo came in August 2022, when a friend of theirs who lives in Italy contacted Surgery for Children asking for help in covering travel, accommodation and surgery expenses in an Italian medical center with which they had made arrangements.

Faouzia looks on as her son sleeps peacefully

The sum was really high and the philosophy of Surgery for Children is not to bring children with complex malformations to Italy, as they would require multiple reconstructive operations and continuous checks over the years. The best choice is to help these children directly in Africa. This brings in benefits in terms of reduced discomfort for patients and families.

The family is offered the opportunity to operate on the child free of charge in Uganda at St. Mary’s Hospital Lacor where Surgery for Children has been carrying out health cooperation missions since 2006, and the path has been tested. Lacor Hospital is sensitive to the health needs of poor patients without the possibility of treatment, even if they come from other countries, and is committed to overcoming the bureaucratic constraints of entry into the country.

The mission to Uganda is scheduled for November 2022 and the parents finally see a small light at the end of a 7-year tunnel during which their son has lived marginalized and out of school due to his urinary incontinence.

However, another outbreak, this time Ebola, disrupts their dreams. The mission is cancelled and the ordeal does not seem to end. The disappointment is huge but Affo’s family has to hang in there. “I was very disappointed but I entrusted myself to God (Allah), as always, and I never thought of giving up,” Faouzia recalls.

In February 2023, much to their relieve, the dream finally begins to take shape. Uganda is Ebola-free and the mission postponed in November, is scheduled for April 2023. A group of Togolese living in Belgium organizes the collection for the journey of Affo, his family and the interpreter who accompanies them, from Togo to St. Mary’s Hospital Lacor in northern Uganda.

The camp kicked off from 14th – 28th April 2023. Affo, accompanied by his mother Ban Faouzia and several other children are camped in the hospital waiting for their turn. Hundreds of children had been booked for this camp. The team has to see them all and determine who’s eligible for surgery and who’s not.

Faouzia immediately agrees to have Affo operated on by Surgery for Children. She doesn’t speak the language spoken in this country and no one speaks her tongue either but she has a smartphone and a tablet at her disposal with which she is in contact with her family and entertains Affo during the long days spent alone in a room reserved for them, with little possibility of communicating with the rest of the people in the hospital.

“Uganda is a more difficult place than Togo,” she says “It is a more expensive country; I compare it to Ghana, but the people are beautiful, welcoming, smiling, supportive, they feel people’s hearts as well as seeing their smiles. I don’t feel too foreign since I arrived. The hospital has similar appearance to others already seen in Africa, but probably with a better organization.”

The time has finally come for SFC to meet their new little friend: medical examination reveals that the bladder plate is very small, the rod is extremely small and incorporated in the scar from the previous operation, and the scrotum is hypoplastic. Urinary incontinence is absolute and the distance between the pubic bones on X-ray is 8 cm. They discuss with the mother and draw up the surgical program.

The team had hoped to operate on Affo in the first week of the camp but a mix-up at the Rome airport meant that one of the suitcases containing some medical supplies necessary for Affo’s surgery will arrive a few days later and he’ll have to wait a little longer. And finally, when the day did arrive, it was a rollercoaster of emotions for the mother.

Affo and his mother after the surgery

“It’s been a bit rough. They were in the operating room from 10am and only came out at 11pm at night. It got a little complicated for them but thank goodness, God helped them find the right solutions,” says Faouzia.

Although Affo took more than 3,700km to be here, 11hrs in the operating room and a few days in the ICU, it was nothing compared to the many years they had to wait. They were initially told that the complication would require four operations in Italy, but here in Gulu, it only took one reconstructive surgery.

“The operation was a success and we’re satisfied with the outcome,” Dr Sergio Dagostino, the head of the mission said. Faouzia can’t believe her eyes when she sees the reconstructed abdominal wall. We ask her what she was afraid of; thinking back to the moment of the surgery. She replies that she doesn’t have the money to pay for it. Only later does she realize that she wasn’t going to pay anything and then she begins to smile. She says that she doesn’t have much money and that she is rationing food. None of her relatives can support her and finding food is her concern.

“I give my heart to God because everything God is doing for us is successful,” says Faouzia who blessed SFC. She was also full of praise for Lacor and the people of Uganda. “The hospital is very good; the doctors too; the nurses received us well. I appreciate that and I am happy too. The food here is different from what we have back home. Sometimes he can’t eat what he wants to eat but we manage like that. People here are welcoming. Thank you so much.”

Faouzia’s eyes are filled with tears a few days later when the last group of the SFC team who stayed to assist Affo for a longer period prepares to leave. She loses her smile and her certainties; she becomes sad and she asks desperately but with dignity, to take them to Italy.

Sr. Rose looks on as Affo plays with balloons

The team reassures her of the expertise of Lacor Hospital doctors, of Sister Rose’s constant presence, and above all that they shall always stay in touch. The greeting with her eyes full of tears is very sad, Affo instead sleeps peacefully in his bed. He’s expected to stay in the hospital for a month and a half.

Surgery For Children is an association of doctors, nurses and non-health volunteers gathered around a project: to promote surgical assistance for children in “poor” countries suffering from congenital or acquired malformations.

The activities are part of maternal and child health, global health, environmental care and international cooperation projects. More than 70 children were operated on hypospadias, anorectal malformations, Hirschsprung, 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 testicle.

Going back home

It’s been three months since Affo was operated on. They should have gone back home two weeks after, but Dr Sergio insisted that they stay at the hospital until Affo’s wounds are completely healed. He didn’t want to take any chances.

That meant that Faouzia will have to wait a little longer to go back to her humble business of weaving mats. With no certain date for discharge in sight, Faouzia is comforted by technology – WhatsApp video calls allow Affo her and Affo to speak with his siblings and the rest of the family members.

“He misses his brother a lot,” says Faouzia of her 7-year-old son who’s steadily recovering. “He says he wants to play ball with his older brother once he gets home.” In the meantime, the 37-year-old and her son will have to stay put and make their self at home here at Lacor.

L-R: Sister Rose, Affo, Dr Martin and Faouzia

Affo’s wound becomes a bit stubborn and Dr Martin’s intervention is required. He comes in without hesitation and with a minor procedure, the wound begins to dry up slowly. Days turned into weeks and weeks into months. Ugandan food doesn’t appeal so much to this little warrior from the French speaking nation. Faouzia must find a solution.

She quickly makes a new friend in sister Olivia who welcomes her into her home. Faouzia uses her time at Olivia’s place to prepare Togolese sauce, rice and porridge for the little boy. She has also familiarised herself with the local market and the mosque where she goes every Friday to plead with Allah to watch over her family and quicken Affo’s recovery.

“I am really worried about my family. I think about them and my job,” she says. Meanwhile, Affo makes some friends of his own. The duty room at the Surgery II ward becomes his favourite hangout. He doesn’t speak much because no one would really understand his French, but he understands the language of love, of friendship and of kindness. Everyone seems happy to see him run around now after weeks of lying hopeless in the hospital bed.

Affo watching a kids’ program in the duty room at Surgery II unit

A computer is in the room, so he spends most of his time playing games, drawing and completing the multiplication table. Soon their visas expire and Faouzia’s sim is blocked. She can neither call back home nor talk to Dr Sergio in Italy who has been receiving daily updates to determine when Affo will be ready for discharge.

Sister Rose, as usual, had to rush to the immigration’s office, clad in full uniforms. The trick worked as immigrations officers quickly recognised her as a health worker and quickly handled her case. The same thing happened at MTN, the mobile telephone network provider. With the visa extended and the communications back on track, everything is fine, at least for the moment.

The discharge date was finally announced – it would be the 25th of July 2023. Affo’s wounds have healed completely. What a relief for Faouzia! She sends us pictures of her mat weaving business and talks of how she’ll have to catch up from where she left. This time, she won’t have to worry about changing diapers for Affo. The boy now knows he has a penis, though he’ll have to wait until he’s 14 to know whether he can father a child.

But that’s something to worry about in the future. The most important thing is that God guided the hands of the surgeons to find a permanent solution to his problem. There’s a party at the Rainbow Children’s Home and Affo is invited. It’s a pleasant way to sign off – face painting, music, dance and cakes.

The mother is on the photo capturing every moment as the little champion dances and mingle with the Ugandan children. It feels like home, but everybody knows goodbyes are imminent. The weekend passes so quickly. Dr Isaac Okello in whose care Affo has been, gets the paperwork ready.

Affo and his travelling companions before leaving the hospital

Asked what she’ll do once she arrives home with her healthy son, Faouzia said; “We will organise a thanksgiving prayer to thank the good God who brought us to Uganda. He gave gave us good healing and also made us return home safe and sound.”

The discharge forms are signed, the theatre team gathers around for one last photograph. Dr Martin is in the team. They bid farewell and sister Rose accompanies them to Entebbe International Airport. The flight takes off at 3:50 am.

“We will miss the friendly people and the market,” Faouzia said, trying so hard not to look sad. “I liked the hospital because all the doctors; all those nurses who are in the facility are very welcoming. I will miss everyone.” She promised to come back and just visit the hospital and the town once an opportunity comes up. What a journey it has been!

A group photo with the theatre team

By Alfred Oryem
By Alfred Oryem
Alfred Oryem is the Communications Officer at St. Mary's Hospital Lacor

Comments are closed.