Successful surgery saves baby born with rare head condition

Alphonsine Mukankuranga carried a normal pregnancy and for nine months she religiously followed the antenatal schedule given by her attendants at Rukara Health Centre, Kayonza District in Eastern Province.
Mukankuranga and baby Ester Niyigena at CHUK before the operation. / Photo by Kelly Rwamapera.
Mukankuranga and baby Ester Niyigena at CHUK before the operation. / Photo by Kelly Rwamapera.

Alphonsine Mukankuranga carried a normal pregnancy and for nine months she religiously followed the antenatal schedule given by her attendants at Rukara Health Centre, Kayonza District in Eastern Province.

Mukankuranga and baby Ester Niyigena at Rukara Health Centre for immunisation after the successful operation./ Kelly Rwamapera.

On January 26, she went into labour and left her home in Rwimishinya for Rukara Health Centre to give birth.


The baby was successfully delivered but the joy of delivering was blurred by the kind of baby she had got.


The baby was born with a head-like substance attached to the back of the head.


Mukankuranga says the sight of her newborn with such a deformity in a state of despair.

“At the time, I found myself in some kind of perplexity I had never experienced before. I wanted to be happy for delivering my first born baby but the worries of its condition overwhelmed me. But again, I couldn’t lament because I had delivered the baby I had carried for nine months,” she explains.

Mukankuranga says the nurses kept the baby from her for sometime “probably to diagnose the abnormalities”.

When the nurses eventually gave her the baby, she named her Ester Niyigena. But it was a tough time as everyone who looked at the baby put forth a comment, some unpleasant.

Tough choice

Mukankuranga says when fellow women saw the baby some said it was surely the work of witchcraft.

She was immediately advised to rush to witchdoctors for help but she insisted on waiting on God for help.

Mukankuranga was advised not to breastfeed the “beast baby” such that it could died and leave her in peace.

“I almost gave up on the baby but a few people encouraged me and stayed by my side. I knew the breast belonged to the baby and I couldn’t deprive her what belonged to her,” she says.

But God works through people

Eventually, the baby had to be transferred from Rukara Health Centre to Gahini Hospital.

With her Mituelle de Sante health insurance, Mukankuranga went to Gahini where she expected to see “the invincible hand of God at work through doctors”.

For about three weeks, she waited to see the hand of God in vain. The “second head” was growing faster than the normal head and the child was being sucked in as if disappearing into this alien substance.

“The extension grew bigger day and night while the child grew smaller. Every day I saw the hand of the devil becoming heavier on my baby who needed grace,” she says.

Let the baby take her inheritance

After failing to convince people, and in fact herself, that the baby could get healed, Mukankuranga chose another option.

“I was told I was going to be given a transfer to another hospital in Kigali and that meant spending more money on the baby,” she says.

Mukankuranga returned home to tell her husband to sell some of their possessions to help her cater for her stay in Kigali during the baby’s treatment.

On her part, she was ready to sacfrice everything for the baby’s sake.

“I said to myself that what I was going to spend was her inheritance from us. If she died, she would have taken what we owed her and if she survived she would have spent what belonged to her”.

With the baby’s transfer, Mukankuranga proceeded to the University Teaching Hospital of Kigali (CHUK).

Hope at last

At CHUK, the doctors said the child was to undergo surgery.

Mukankuranga expected to get more financial support from home while at CHUK.

“But just before I communicated home, a group of Good Samaritans came to visit patients and promised to cater for all the requirements for my daughter while she received treatment,” she says.

This group, that did not want to be named, is comprised of Rwandans who studied at a university in India.

The group supported Mukankuranga for months until the baby was operated on and the head healed.

Today, Mukankuranga has returned home and baby Esther Niyigena is doing well and gaining weight.

What was believed to be a witchcraft problem is now clear to everyone that it was a medical condition that needed doctors “who the hand of God works through”, as Mukankuranga says. Niyigena’s condition was a birth defect called encephalocele.

Niyigena's medical condition explained

When Niyegena was admitted at the University Teaching Hospital (CHUK), he was malnourished, under weight and had a sac-like protrusion on the head.

These are some of the symptoms of a birth defect, encephalocele, that Niyegena was diagnosed with, explains Dr Severien Muneza, a neuro surgeon who spearheaded the surgery operation together with a team of anesthetists and pediatricians that were responsible for her health before and after the surgery at CHUK.

Encephalocele, also known as cranium bifidum, is a neural tube defect. The neural tube, Muneza explains,is a narrow channel that folds and closes during the third and fourth weeks of pregnancy to form the brain and spinal cord.

He further defines the condition as one characterised by sac-like protrusions of the brain and the membranes that cover it through openings in the skull, which explains why the child was said to be having two heads.

Common symptoms also include, among many, buildup of too much fluid in the brain, delayed growth, and a small head.

He explains that before undergoing the operation that took place on April 21, Niyigena was underweight, with a weight of two kilos, the protrusion included, was malnourished and had hypothermia.

“The child was malnourished because of the deformations that started in the womb.”

“This required us to first feed her for two months in order for her to gain normal weight and improve her health. She also had a small head which was unfit for her that needed to go back to its normal size.”

Also, during the period of feeding her and improving her health, Niyigena developed some infections which increased her health risk,” Muneza says.

Nonetheless, the surgical operation that involved removing the protruding part of the brain and the membranes, covering it back into the skull and closing the opening in the skull, was successful under strict monitoring of the pediatricians.

It has been two weeks since Niyigena was discharged from hospital, and “is currently in a good and healthy condition although we still monitor her body and brain growth,” Muneza says.

The case of encephalocele in children

Muneza reveals that 25 per cent of children globally are born with this defect. Also, 25 per cent of these babies born with this defect do not survive the condition, the reason being, “some parts of the brain are conjoined to the protrusions.”

He further reveals that the condition is caused by the deficiency in vitamin B and folic acid, also known as folate, genetic factors in families that have family members with other defects of the neural tube: spina bifida and anencephaly, environmental exposures before or during pregnancy might be causes, although the research conducted is not yet certain. The main cause, however, is believed to be a folic acid deficiency.

“Usually encephaloceles are found right after birth, but sometimes a small encephalocele. An encephalocele at the back of the skull is more likely to cause nervous system problems, as well as other brain and face defects which result from failure of the surface ectoderm to separate from the neuroectoderm,” he says.

Effects of this condition often include preterm birth, under birthweight, and having multiple birth defects.

This is the tenth case of encephalocele that Muneza has treated at the hospital alone and only in one case the baby died after operation.

Rwanda only has two neuro surgeons yet cases of neural tube defects are becoming rampant. Luckily, with the help of medical insurance, such cases are treated with many of them surviving the condition. And as with Niyigena, the family parted with only Rwf15,000 for the operation because she was covered under mituelles de sante.

“Some children who are born with this condition do not seek treatment due to ignorance or myths of witchcraft,” he says.

Neural tube defects appear to be associated with maternal lack of folic acid, and supplementing the diets of all women of childbearing age with folic acid is decreasing the rate of these disorders.

As such Muneza advises pregnant women to seek early treatment incase symptoms of this birth defect arise and ensure the recommended daily intake level of folate is 400 micrograms found in foods and dietary supplements.

Additional reporting by Sharon Kantengwa

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