Six in 10 full-term babies and eight in 10 preterm babies, are affected by neonatal jaundice, according to the World Health Organisation. In Africa, 668 children per 10 000 live births are affected by the diseases, the highest in the world in terms of its severity.
Five days after she was born, Hannah Daniel was diagnosed with jaundice at the AMAC Hospital, Kuchigoro, Abuja. Medical personnel at the hospital tried to manage the situation but had to refer her to the Asokoro General Hospital, due to its lack of facility. By her eighth day in the world the referral letter read, “severe jaundice.”
For two days, her parents Bisara and Hanatu, who are among the internally displaced people living in Gongola Camp, Abuja, went back and forth to Asokoro, hoping to get a bed space for their daughter to be admitted and for treatment to begin.
Hanatu said, “In the meantime, her temperature was on a steady high, as her situation worsened. The only thing I knew how to do was something I had seen my own mother and grandmother do as a young girl growing up in Madagali, Adamawa State.
“I tried to keep her temperature down by dabbing her body with a wet towel. Also, every early morning since the diagnosis, I would sit with her in the sun, holding her in a way that lets the sunlight into her eyes.”
It is believed that this routine works in the same way as phototherapy sessions administered in hospitals for babies with jaundice.
The story was hardly different for Tonbra Oboro in Yenegoa, Bayelsa State.
Two days after he was born, his grandmother was suspicious of the fairness of his skin unlike his mother, Virtue Oboro, who thought the child merely took after the older woman. They were back in hospital upon the older woman’s insistence.
Virtue, said, “I am grateful we did, because it was not until the doctors explained to me that my son had jaundice and how bad a state he was in, that I knew I could lose him if quick action wasn’t taken.”
The first time mother’s joy was short-lived as she helplessly watched her son deteriorate and the doctors run helter-skelter to save him.
Like with Hannah, the lack of bed space drama began for Tonbra and went on for about two days.
In 2015, a symposium addressing neonatal jaundice (NNJ) globally, was organised as part of the Don Ostrow Trieste Yellow Retreat, a meeting where world experts discuss basic and clinical aspects of bilirubin.
A fallout of the gathering was a study on the disease in Low- and Middle-Income Countries (LMICs) which stated that over 60% of all newborns develop neonatal jaundice (NNJ), a physiologic condition characterized by yellowish discoloration of the skin and conjunctiva as a consequence of increased levels of serum bilirubin during the first week of life.
Dr. Rose Abah a paediatric consultant, at the Federal Medical Centre Markurdi, described jaundice as a yellow discoloration of the skin and eyes caused by the build-up of bilirubin, a waste material, in the blood, due to a baby’s underdeveloped liver. When it occurs in the first 28 days of the child’s life, it is referred to as neonatal jaundice occurs in the first 28 days of life.
She said, “In the newborn period, if you have excess breakdown of red blood cells, the liver is not able to cope. With the fact that the enzymes are not fully mature, you can have excess, which spills over as jaundice.”
Still, there are conditions which predispose some babies to more risk of jaundice.
According to Abah, “Preterm babies, babies of mothers with blood group O+ and babies with risk of developing sepsis, among others,” fall in this category.
In newborns, jaundice is usually from unconjugated bilirubin and it is highly toxic to the growing brain.
Abah explained that, “For a mother who is O+ you want to look at other risk factors and do a serum bilirubin check and the baby’s blood group, bilirubin level for the child and then the blood group type.
“These are the minimum you are required to do. If the baby’s blood group turns out to be O, and there are no other risk factors, you can relax. But if it is different from the mother’s, then you suspect a likelihood of incompatibility.”
Jaundice can be deadly if untreated and in the cases of these two newborns, the doctors feared that complications had already set in for Tonbra, and there was need for phototherapy session to begin but units were unavailable.
With the delays, their bilirubin levels increased.
Eventually on day 14, Hannah was admitted at the Asokoro General Hospital, after some patients had been discharged. The treatment which ordinarily may not have taken more than one week if it had been nipped in the bud, took about three weeks including a blood transfusion and time at the intensive care unit.
A visibly distraught and worried Hannatu said, “She is not sucking. Her skin colour is still not normal. I am scarred. I have never seen this kind of thing before.”
There was also some silver lining for Tonbra, as another mother opted for her baby to be discharged from a unit to give him a chance. No sooner had he settled into the unit when darkness struck due to power outage – a typical Nigerian narrative.
Worsening the situation, Virtue said, was the lack of a working generator or charged inverter in the neonatal intensive care unit at that time. “My spirit went cold!”
The little fighter managed to stay on, for an emergency blood transfusion and was able to get into a phototherapy unit which became home for the next eight days.
In the preceding days after her son had been stabilised and discharged, the reality of what had happened and the odds against him, were presented to Virtue. Her son was at risk of developing cerebral palsy, kernicterus, brain damage, deafness, blindness, mental retardation, slow developmental stages and even death. “We had escaped all these by whiskers.
A review of 198 studies which took place from 1990-2014, headed by Bolajoko Olusanyo – lead researcher at the Centre for Healthy Start Initiative, Lagos – was published in 2016. It was based mainly on single-hospital experiences in Nigeria and concluded that little progress had been made over a 50-year period with kernicterus being highly prevalent and continue to be associated with a high coronary flow reserve.
Virtue said, “As we got home, I recovered slowly from the whole episode and decided to read more about it. I realised that neonatal jaundice isn’t as simple as it seems. I listed down the visible problems we had encountered in hospital – lack of phototherapy units, epileptic power supply, cost and dehydration of the baby while under the lights.”
This experience birthed Crib a’glow, a home-grown innovation Virtue developed, to end neonatal jaundice while addressing the challenges her son had to overcome.
Crib a’glow is a low-cost, solar powered neonatal phototherapy device that delivers high intensity in low resource areas were babies die from jaundice.
The mother of two, a Fine Artist with a specialty in Graphics and Product Designing, developed it with the help of medical doctors, engineers and biomedical engineers, to come up with a solution that breaks the barrier of availability, electricity, dehydration and cost in phototherapy treatment.
Jaundice is a very common condition among newborns and its treatment also easy, with options including phototherapy, blood transfusion and pharmacotherapy.
Abah said, “The cost of using a phototherapy unit is between N300 to N500 per day in public health facilities,” It however, cost Virtue an additional N200, 000 including miscellaneous like hand gloves, food and syringes, among others, in the public hospital in Bayelsa, South South Nigeria, where her son was admitted.
Over 40% of infants lack access to phototherapy treatment because of poor or lack of electricity and the cost of using the phototherapy unit. Depending on the severity, treatment in a unit could be for a maximum of three days and in some cases up to two weeks. But where it goes beyond this, then there is no need for the unit as it has become a case of conjugated bilirubin, not jaundice.
After four failed attempts, Virtue and her team succeeded the fifth time. The unit which costs $420 and can be hired, is currently being used in hospitals across Nigeria, with plans underway for export to Ghana.
Regardless, there are still hurdles to contend with.
According to Virtue, “Our major challenge is within the hospitals and the bureaucratic bottleneck in government. However, we are working on that already. We are using a marketing strategy and are gradually breaking in. Crib a’glow is not a luxury product. It is a need we’re meeting and I believe businesses that fulfill needs will eventually have good patronage.”
For the entrepreneurial mum, in addition to meeting the standard of phototherapy in developing countries, smaller communities in developed countries can also have access to the Crib a’glow in their homes.
As Virtue once worried about the looming threats of cerebral palsy and other life-threatening situations that were reeled out to her, Hannatu battles the state of her child’s health and fears the worst as doctors are yet to give her daughter to clean bill of health.
This story was done with the support of Code for Africa.