There was only one passenger strapped in the back of the bush plane. She said little during the flight and wore a look that revealed nothing about her ordeal.
The pilot said he could only remember one thing about the 20-year-old, called Victoria Mishoni.
Hidden beneath her shawl was a tightly wrapped bundle. She held on to it tightly – yet tenderly – and he noticed that it never left her arms.
The bundle contained Victoria’s newborn baby, named Rose Jackson. But the child, who was born with a condition called gastroschisis, was dead.
Ms Mishoni, from Manyara in central Tanzania, said she could not believe what had happened: “I never thought I would go home with a dead body.”
Warning: This article contains images and details of children in hospital with the gastroschisis condition – some people may find this distressing
Her troubles began a month earlier when she first laid eyes on her baby. The 20-year-old said she was astonished by what she saw.
“I knew my baby was not well, but I was really shocked to see how her stomach was out in the open air. I had never heard of such a sickness… why did this happen to my baby?”
Gastroschisis is a birth defect in which the abdominal organs – usually the large and small intestines – have formed on the outside of the body.
In other words, the baby’s guts end up on the wrong side, although they are still connected to the body via a hole in the tummy.
Without immediate treatment, the organs will shrivel, and the baby will die.
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‘Mortality rate is 100%’
In countries like the UK and the US, children with gastroschisis are highly likely to survive.
The defect is usually picked up in pre-natal scans and babies are rushed to surgery after childbirth. Long-term survival rates exceed 90%.
In much of Africa, doctors consider it to be untreatable. According to paediatric surgeon Dr Anne Wesonga, “the mortality rate is 100% – it is literally 100%”.
The author of two landmark medical studies on gastroschisis, Dr Wesonga is the foremost advocate for children with the condition in Africa – although it is a lonely and frequently exasperating role.
“The medical attitude here is so bad, the basic attitude is that the babies will die,” Dr Wesonga explained.
Gastroschisis is considered relatively rare with one in every 2,000 to 4,000 births affected worldwide.
Yet doctors in East Africa are reporting a significant increase in the number of babies suffering from the condition.
Dr Wesonga, who works at the sprawling Mulago National Referral Hospital in Uganda’s capital, Kampala, says the paediatric department used to admit a baby with gastroschisis every one or two weeks.
Now her unit receives one child suffering from this condition every single day.
“I don’t know why this is, I am unable to explain it,” she said.
“Maybe the mums are more willing to seek treatment now. But this is something that needs to be studied, we need to understand what’s going on.”
‘Suddenly there were three’
Across the border, in Tanzania, Victoria Mishioni and her baby daughter were admitted to a rural hospital in a town called Haydom.
Upon their arrival, she discovered that two other mothers, with babies suffering from gastroschisis, had just been admitted.
For the staff at Haydom Lutheran Hospital, this was a serious problem.
Dr Dorcas Mduma admitted they “lack the equipment and expertise” to deal with gastroschisis, adding they are now experiencing a marked increase in the number of babies with the condition.
“Maybe it is because these women are poor and lack proper nutrition? Maybe this is why we are seeing so many of these cases,” said Dr Mduma.
Medevac pilot Peter Griffin, for one, has never dealt with a situation like the one he found in central Tanzania.
When the aviator, who works for the charity Mission Aviation Fellowship (MAF), was directed to Haydom Hospital, he was told that he would be performing an emergency “evac” to a larger hospital in northern Tanzania.
Yet no one at MAF had performed a medical evacuation with three babies in the same plane.
He said: “It was a surprise. They told me there were two children with this condition at Haydom Hospital and then suddenly there were three mothers, three children with gastroschisis and a nurse as well. It took me some time to recalculate things.”
Mr Griffin managed to deliver them safely to Kilimanjaro Christian Medical Centre (KCMC), in northern Tanzania.
Victoria told Sky News that she felt a great sense of relief because she did not have access to “great doctors” at home.
Short-lived hope as babies die
Such optimism soon evaporated when the baby of one of the other mothers from Haydom died five days after their arrival.
Worse still, the child belonging to the second mother died seven days into their stay at KCMC.
Suddenly, Victoria was left on her own – although she still held out hope.
Her baby daughter seemed to be gaining some strength and the doctors scheduled an operation to reinsert her intestines on 1 December.
One day before the surgery, however, the child picked up a temperature and in a matter of hours Rose Jackson was dead.
Victoria said the doctors were unable to explain to her why her daughter had passed away.
“I believe it was God’s will and so I accept it. I am not angry or bitter with God – or the doctors and nurses,” she said.
Unsurprisingly, gastroschisis expert Dr Wesonga sees the situation differently.
“The three babies didn’t need to die. These babies didn’t need much, they didn’t need thousands of dollars of treatment and that is why it hurts so much,” she said.
The 38-year-old surgeon first took an interest in the affliction while doing her medical training at Kampala’s Mulago Hospital.
Babies with gastroschisis spent a couple of days in the neonatal unit. Then, they died.
The doctor recalls: “I saw all these very healthy babies brought in, their eyes wide open, kicking their feet. They were perfectly healthy babies.”
“Three days later, they were so weak they couldn’t cry. The intestines turned black and they are totally dehydrated. It was over.”
Why were the babies dying?
Despite the demands of her training, Dr Wesonga did something revolutionary. She started to ask “why?”
She set up an academic study which focused on 42 babies admitted to Mulago Hospital with gastroschisis over the course of 12 months.
She recorded their symptoms, witnessed their treatment and formed relationships with their parents.
Of the 42 babies admitted to the hospital, 41 died. The one survivor had “peculiar features”, she said, with small intestines that medics were able to push back in.
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Dr Wesonga said the experience was so upsetting that she almost quit the profession.
“I took a personal interest in the children, but it turned into a traumatic moment in my life,” she said.
“I mean, it was so traumatic that I questioned whether I was doing the right job.”
She would return to the brutal realities of gastroschisis on a posting to an “up-country” hospital in the city of Mbarara in 2018.
It was time, she said, “to put the things I had learnt to good use”.
Solutions improvised to stop babies being ‘left to die’
Dr Wesonga knew that medical staff in East Africa rarely took measures to seal and protect protruding organs from the elements.
In developed countries, doctors stick the intestines into sacks called silo bags to prevent infection and fluid loss.
But silo bags are expensive at $200 (£157) each and hospital administrators in Uganda refuse to pay for them.
“If you think about it, $200 would pay for antimalaria medication for 500 babies – so you see the problem,” Dr Wesonga explained.
The surgeon started to improvise with cut-price alternatives like surgical gloves and urine bags.
She said: “We found that we could use surgical gloves by pushing the guts into them and suturing (stitching) the glove on to the mother’s tummy. Same thing with urine bags. The advantage is they’re rarely out of stock.”
Second, she had to find a way to keep the babies hydrated and warm. But in an overstretched hospital, this is a deceptively difficult problem to solve.
Babies with gastroschisis require a near-continuous supply of fluids but they are unlikely to receive these fluids on a ward where 40 babies are cared for by a solitary nurse.
Such children, “are just abandoned,” says the surgeon.
“They are left to die.”
In Mbarara’s up-country hospital, Dr Wesonga set to work changing the narrative, winning the support of her departmental head and the nurses on the ward, who agreed to alter their shift patterns.
The results of her experiment, which took around 11 months, were profoundly shocking.
“We ended up saving 50% of the babies who came in. We were astounded. We saved so many just by using the government resources that we had to hand,” she said.
Dr Wesonga proved that she could dramatically improve mortality rates at a minimal cost.
Death and debt
In neighbouring Tanzania, however, 20-year-old Victoria Mishoni told us a more familiar tale.
She said her daughter’s intestines were not wrapped and sealed by medical staff at KCMC, adding that responsibility for feeding and hydrating the child was given to her alone.
Nurses light-heartedly referred to her baby as “naughty”.
Victoria said: “When my daughter was hungry she would cry very loudly and the nurses would come and tell me, ‘your naughty baby is crying, go and feed her’.”
After Victoria’s daughter died, KCMC handed her an invoice of 871,400 Tanzanian shillings – around $320 (£250) – for treatment received.
She told Sky News she was not permitted to leave the hospital – or collect the body of her daughter – until the bill was paid.
Unable to pay or borrow the sum, Ms Mishoni said she spent an additional 11 days stuck inside the hospital.
Eventually, MAF raised the money through its donors and arranged Victoria’s flight home to central Tanzania.
The 20-year-old said she was deeply grateful.
“I couldn’t leave without my baby there. How could I go and leave the body behind?”
When Sky News contacted KCMC, spokesperson Robert Mtawa denied that Ms Mishoni was prohibited from leaving the facility.
“Our culture is to treat patients first and make arrangements for payment later,” he said.
“We have social welfare officers who deal with patients who are unable to pay their bills. Those who cannot pay receive exemptions,” he said.
Mr Mtawa said that doctors at the hospital were too busy to answer our questions about Ms Mishoni’s care.
He pointed out that more than 1,000 patients seek treatment at KCMC every day.
Babies still dying as hospitals resist change
In Uganda, Dr Wesonga returned to Mulago National Referral Hospital, introducing a 20-point protocol that she devised at the up-country health centre.
Mulago, which is the largest public health centre in the country, made some initial headway but these improvements have been lost.
It is a problem, she says, of training, resources and staff who are “not so keen” to change the way they work.
“We’re doing very badly. The survival rate is poor, 90% of the babies with gastroschisis are dying I’m afraid,” she said quietly.
The consequences are clear. Instead of nursing babies with a treatable condition back to health, medical staff in East Africa are far more likely to perform what they refer to as the “last office”.
The baby is taken from its cot and the tubes and dressings are removed.
The nurse cleans the child, wraps it tightly and passes the body to the mother. The mother cries in such a way that her pain and her sorrow are felt by everyone on the ward.
Dr Wesonga says it breaks her heart every time she hears it.
