'I had to pay sh32m to keep my babies alive'

It is tough handling preterm babies during the lockdown.

Resources used in managing them, such as ambulances, additional oxygen, and intensive care nurses in most government hospitals have been withdrawn to care for COVID-19 patients. Preterm babies require intensive care, just like COVID-19 patients.

This is a crisis, writes Jacky Achan.

At six months, the babies had come way too early. David Wafula (not real name) and his wife had not even started shopping for the twins they were expecting. They thought they still had time.

They were first-time parents. Wafula, 31, was not taking chances. He secured a movement permit from his area leader to ensure that his wife continued to get antenatal care without difficulty during the COVID-19 lockdown.

She had a blood sugar condition and cervical cerclage (a condition where the cervix starts to shorten and open too early during pregnancy, causing either a late miscarriage or preterm birth).

"One day she experienced contractions. I took her to the hospital. That night, I received a call informing me that she was giving birth. I did not think we would have the babies so soon," says Wafula.

"We were planning a baby shower after the lockdown was lifted," he adds. She had a natural birth. "The first baby came easily, the second was difficult, but she managed," reveals Wafula.

Nothing had prepared Wafula and his wife for the experience. At six months, the babies were not fully developed.

The new parents could not take their twin babies home. The babies had to be placed in a neonatal intensive care unit until they had developed fully.

THE RISK/BURDEN

Preterm birth complications are the leading cause of death for children under five, according to the World Health Organistion (WHO).

It is estimated that 15 million babies are born preterm every year, that is, more than one in 10 babies around the world and this number is increasing.

Uganda ranks 28th globally with a high premature birth rate of 13.6 per 1,000 live births. Unfortunately, 1.1 million preterm babies die every year.

However, with treatment, 75 percent could survive.

"Of the newborn babies we have so far delivered during the lockdown at Mbarara Regional Referral Hospital, 20% are preterm," says Dr Jane Namusisi, who works in the children's ward.

Dr Namusisi says preterm birth is not a new occurrence, but the COVID-19 lockdown may have complicated the situation. Shortage of care Dr Peter Kungu, a medical officer at Kawempe Hospital's department of obstetrics and gynaecology, says preterm births happen daily.

He says under normal circumstances, there are resources pooled together to mitigate preterm births, but, these, including ambulances and staff, have now been diverted for the COVID-19 response. "Some hospitals currently have no ambulances or intensive care nurses.

You can imagine what is happening out there," says Dr Kungu. "Think of a mother in the village who gives birth prematurely and transport is a challenge. Preterm babies require intensive care, just like COVID-19 patients.

"But as of now, the teams responding to COVID-19 have secured additional oxygen towards the response, intensive care nurses have also been withdrawn to care for COVID-19 patients," he adds. Kungu, however, says the same is needed for preterm babies. "We cannot postpone preterm labour. If there are not enough resources and medical staff to take care of preterm babies, there are consequences," explains Kungu.

Dr Namusisi says many organs of preterm babies are underdeveloped and consequently, their bodies are less prepared for life outside the womb. She says preterm babies may have difficulty in breathing and feeding, are prone to bleeding in the brain and are vulnerable to infections.

Many survivors of preterm birth face a lifetime of disability, including learning disabilities, as well as visual and hearing problems, according to WHO. "My greatest fear is losing my babies," says Wafula. "The incubators help keep them warm.

The babies are continuously monitored, fed and treated in the intensive care unit. I cannot even hold my babies, but have to watch them survive through the incubator," says Wafula.

"My prayer is that they will be able to breathe on their own without the support of machines," he says. Heavy costs for survival Wafula's health insurance covered only normal birth. The preterm birth of his daughters on May 10, 2020, meant he had to pay from his pocket for their care. The hospital bill skyrocketed. "After birth, the bill was at sh19m. The following week, it shot to sh32m.

I was spending sh1.2m daily. I was overwhelmed as they came prematurely," says Wafula. The hospital also piled on the pressure. "I was bombarded with text messages, emails, telephone calls plus conference calls to state how I was planning to clear the bill," he reveals.

Determined to save his babies, Wafula asked to have them transferred to the Mulago Hospital Neonatal facility. It took his savings and contributions from friends, workmates and family to clear sh23m of the first bill.

He has also signed a financial commitment document with his employers to clear the remaining sh10m that will be deducted from his salary.

For a young man with loans and looking to develop, the deductions leave a big dent, but he cannot worry about it now. With the babies at Mulago, Wafula is focused on seeing them pull through.

"I paid a commitment fee of sh2m for the first three days aa a payment schedule that is less stressful was being worked out." "Most times parents, especially those who come to government facilities, are always in dire need of help and cannot even afford baby formula.

It takes fundraising even from fellow patients. We also have social workers who fundraise in advance and come in to help when called upon.

Fundarising is the new normal," says Dr Kungu. Where hope lies According to Dr Kungu, Uganda should not wait for a crisis, donor or the private sector support when it comes to healthcare.

There should be political will by our leaders and politicians to do the right thing. The health sector took up about 8.9% of the national budget for the financial year 2019/20, down from 9.2% in 2018/19.

Dr Kungu says when making policies and drawing budgets, when the health authorities appeal for more funds to get more incubators or more critical staff, their request should not be ignored.

How many neonatologists do we have in the country? They are less than 15 and most of them are concentrated in regional referral hospitals.

At Kawempe hospital, for example, we have two neonatologists, but we deliver at least 70 babies daily, some of whom are preterm. We need more neonatologists. With political will, we can train a critical mass of doctors and nurses to offer the best and affordable healthcare in the country," Dr Kungu adds.

Wishes of a first-time father Wafula wishes to see his twin daughters grow up and have a good childhood. 40 NV Tuesday, June 9, 2020 HER VISION "It is tough seeing my babies connected to tubes," he says.

At Mulago, they were moved from using a ventilator to Continuous Positive Airways Pressure (CPAP) to help keep sufficient oxygen in their bloodstream. The babies, who weighed 950g and 750g, will also have to gain up to 2kg each, before they can be discharged from hospital.

"I want to see them pull it off, be able to see, talk, run like any other child. I want to see them develop and grow into normal girls, play and interact with other children, then grow into annoying teenagers and be given every opportunity in life, just like other children," he states.

To support Wafula and his twin daughters currently in Mulago, he can be reached on 078-1-444-069.