Maame Akosua Serwaa-Gyening is a paediatric nurse and the author of this piece
The readings on the monitor stopped suddenly, and my heart skipped a beat. I was not prepared to be the bearer of the news that the twins could not make it.
How does the medical team explain to a couple suffering from childlessness for a decade that they had lost their twins, born 5 days ago, to a preventable condition
Read full articlecalled Neonatal Jaundice?
In many years of working in the Emergency Room (ER) as a paediatric nurse, this was one of the most challenging tasks I had to carry out with my colleague doctors.
A look at the mother screaming at the top of her voice made tears roll down my face. I had to excuse myself quickly to maintain good composure.
Though it was late in the night, the mother’s scream drew the attention of many people to the ER to find out what was happening.
Within a short period, all one could see was a group of people who could not hold back their tears. What a night duty! Other members of the night team were just as speechless.
What went wrong from the time of birth till their discharge? What were the systems lacking to help these neonates survive? I guess these were the questions they were all asking themselves.
The father of the babies, who had a team of prayer warriors fervently praying with him for a miracle to happen, was not ready to accept any negative news from the medical team.
Though the long-term complications of jaundice had been explained to him, he was ready to fight with his last breath to make the children survive.
Suddenly, I heard one woman in the crowd saying, “This same jaundice happened to my daughter, and now she is not talking, walking, or growing like other children.
I wish God took her as a baby so I would not need these frequent admissions to the hospital". As I listened to this woman talk to the other parents, I realised the struggles mothers living with children with cerebral palsy had.
Finally, when we managed to calm the parents down and broke the unpleasant news, the father held onto my scrubs tightly and shouted, “Maame Nurse, please do something because my daughters cannot die like that”.
That statement hit my bones, and I wished something else could have been done, but they arrived at our hospital too late.
In my country, Ghana, two years after marriage without a child can send a woman to her early grave, and this was ten years of marriage without the cry of a baby in their home.
Only God knows how this couple had survived till this time. Miraculously, God blessed them with a set of twins, two beautiful girls.
Pregnancy and delivery were very smooth until they were discharged home. On the third day, the mother noticed that her baby's eyes were yellow and not sucking well.
She complained to almost everyone who visited that day, but they all said she should expose them to the early morning sun.
This she did for a day without improvement. Finally, the elderly aunty assisting in caring for these babies decided to put glucose on their eyes and give them some to drink.
Later, when the parents noticed the babies had stopped sucking the breastmilk and had developed a change in their posture accompanied by a high-pitched sound when crying, they got alarmed and rushed them to the ER where I work.
This was 2 days since the mother first noticed the eyes yellowing. On arrival at the ER, the paediatrician told them both babies had severe jaundice with brain involvement after taking a history and examining them.
However, the medical team put in every effort to save them but unfortunately, the babies died in less than 24hrs.
The ER staff deals with this and many other emotionally draining stories concerning neonatal jaundice. I remember how a man nearly beat his wife after the doctor told them their baby had jaundice.
According to this man, his wife loved groundnut soup when she was pregnant, and that caused neonatal jaundice. That was when I realised the level of ignorance about neonatal jaundice in my country.
Elsewhere in the developed world, there is no difficulty in the management of neonatal jaundice, but not in my country, especially when one of the causes is the first item almost all expectant mothers buy to give a good smell to their baby’s clothes; CAMPHOR also known as NAPHTHALENE BALLS.
Statistics have shown that 6 out of 10 babies who are carried to full term and 8 out of 10 premature babies may develop jaundice a few days after birth.
Causes of neonatal jaundice
One of the leading causes of neonatal jaundice is the excessive breakdown of red blood cells and the immaturity of the liver to handle it. When red blood cells are broken down, one of the by-products is a pigment known as unconjugated bilirubin, which is yellow.
It goes through a process with the help of the liver to be conjugated and removed from our bodies. However, due to the immaturity of the newborn's liver, not all the unconjugated bilirubin gets conjugated, and some remains in the baby’s blood. It is this yellow pigment remaining in the blood that gives a yellow colour to babies.
In a condition known as glucose -6-phosphate dehydrogenase (G6PD) deficiency, the lack of the enzyme known as G6PD causes red blood cells to break down in excess in response to certain medications or chemicals like camphor or infections. The excess breakdown of the red blood cells overwhelms the liver, and jaundice occurs.
There are other causes, like blood group and rhesus incompatibility and infections, which all lead to an excessive breakdown of red blood cells in the baby. This unconjugated bilirubin can enter the brain and cause brain damage.
Other causes, like liver diseases, may lead to jaundice in the newborn, but this is not common.
This demonstrates that pregnant women's food does not cause neonatal jaundice.
Management of neonatal jaundice
Management of neonatal jaundice includes exposing the babies to a type of blue light called phototherapy; the Firefly is an intense form of blue light and works very fast to decrease the amount of jaundice in the blood.
Another form of treatment is a procedure known as exchange blood transfusion used in severe cases. In this procedure, blood is removed in small volumes from the baby, and fresh blood is given back with each amount that is taken out. This is done to decrease the amount of blood with unconjugated bilirubin in the baby.
What about early morning sunbathing, which has been a practice of old?
SUNBATHING SHOULD NOT BE USED IN MANAGING BABIES WITH JAUNDICE, AND NEITHER SHOULD THEY BE GIVEN GLUCOSE.
Complications
The major complication from neonatal jaundice is a condition known as Kernicterus. It is a type of brain damage that results from a high amount of unconjugated bilirubin in a baby’s blood. It can cause cerebral palsy and hearing loss. Others may die as described above.
But who is to be blamed for this preventable condition?
Most health facilities in the country do not have phototherapy machines, leading to delayed treatment initiation as they need to refer.
Many people lack adequate education on neonatal jaundice, like the man who nearly beat up his wife.
Family members, friends, and sometimes healthcare personnel wrongly prescribe sunbathing to our newborn babies when they become yellow.
As I signed out from my night shift in the morning, I could not stop thinking about this couple and the countless parents who have suffered the same fate due to late detection and the poor management of jaundice.
As a consequence of neonatal jaundice, children have developed cerebral palsy and some are perceived to be from the river gods.
I left the hospital in pain that day, praying that no child should suffer or die from a condition as preventable as neonatal jaundice.
Recommendations
NEONATAL JAUNDICE IS EASILY PREVENTABLE
AVOID THE USE OF CAMPHOR/NAPHTHALENE BALLS IN EARLY INFANCY
DO NOT SUNBATHE BABIES WHOSE SKIN OR EYES ARE YELLOW
RUN TO THE NEAREST FACILITY WHEN YOU SEE YOUR BABY’S EYES ARE YELLOW
PHOTOTHERAPY UNITS MUST BE AVAILABLE IN EVERY HEALTH FACILITY WHERE CHILDREN ARE BORN
Written by: Maame Akosua Serwaa-Gyening, a Paediatric Nurse
Email: [email protected]
