In Summary

Challenge: Every couple looks forward to having children for they bring so much joy to the family. But carrying a pregnancy for nine months in anticipation to receive a normal baby, only to be told that it has brain and spinal cord damage is so devastating, writes Sarah Aanyu.

Rosemary Nabwaato, 27, just like any expectant mother went about shopping and prepared to have her baby after nine months.
When the baby was finally delivered, Nabwaato’s life shifted from glam to gloom something that has traumatised her throughout the motherhood journey.
“My child lives in a world of her own. At nine months, the baby lost its sight, smile, could not recognise her parents and cannot sit on her own,” Nabwaato recollects.
Nabwaato is a telecommunications engineer whose child’s condition has hindered her from practicing her profession because she has to dedicate time to look after the baby who is now two years and eight months old.

How she got to know
“I realised my baby had an abnormal growth trend when I went for an ultra sound scan at Naguru Hospital. I was seven months pregnant then,” says Nabwaato.
The doctor on duty that day disclosed to her that the child she was carrying was not going to take a normal trend of growth.
She could not believe that her first child was going to turn out that way. The doctor counselled her, gave her a detailed report about what to expect and how to deal with the situation.
She picked up the broken pieces, headed home and gave the doctor’s report to her husband. “My husband was skeptical about the diagnosis. He preferred to wait and see the child’s condition after she was born”, she recounts.

Her birth
“I gave birth on February 1, 2016 at exactly 3am through C-Section, a procedure that almost took my life.
The baby’s appearance at birth gave us hope because everything about her seemed normal except the severe pain made it difficult for her to breath, a condition that prompted the doctors to put her on breathing support for three weeks,” adds Nabwaato.
Upon discharge, she was told to take good care of the baby and to frequently take her back for check-ups on scheduled days.
But because the checkups were costly, they resorted to taking the baby for check-ups as and when they had the money.

Deciding to go for operation
It took Nabwato almost five months to acknowledge that some of the baby’s body parts were not functioning normally.
At this point, she decided to return to hospital where the doctor reviewed her and advised them to take her for a computerised tomography- (CT) scan which reported that the baby had water in her brain.

After the diagnosis, they were then advised to go to Care Hospital in Mbale, where another CT scan was carried out. The doctor told them that almost the entire brain was damaged and asked them whether they could explore the option of an operation.
“As new parents, we were devastated but we had to take a tough decision on whether to go ahead with the operation or not but we wanted our daughter to be fine”, she adds.
We gave the doctors a go ahead and our baby was operated. She was operated with a new medical technology called Endoscopic Third Ventriculostomy (ETV) and it was done when she was nine months old.

Effects of the operation
“After the operation, the negative results outweighed the positive ones. Though her head size did not increase and the sunken eyes normalised, she became blind, developed seizures, failed to sit or crawl, her neck was not firm, she could not chew and she vomited whatever she ate. This is the condition she is living in till today,” she narrates the sad ordeal.
Nabwato has since forgotten about sleep from the day she gave birth because she has to stay alert incase the baby wakes up. The baby also cries throughout the night.

“While the baby has all the features of a normal child, she cannot do anything on her own. She has teeth but she cannot chew. All her food must be mashed. She vomits everything she eats.
The worst bit is that she cannot excrete. She must be forced to do so. I have to push a syringe with water in her anal passage to help her excrete,” Nabwato explains.

Moving on
“I work in my husband’s company and I volunteer in other organisations which gives me enough time to take care of my child. I work half day and get back home to take care of my baby. She does not blame anyone because she knows the kind of a child she has and that’s the reason she is home by midday to take up the roles for the rest of the day.

Starting up an organisation
This has given Nabwato the strength to go on. She hopes the organisation will be able to train people who will be looking after the children with spinal cord and brain damage so that they are aware of what they will be finding at home.
This will help mothers to concentrate at work or businesses without having to worry about children at home.

Ray of hope

When she attended a stem cell seminar early this year, she was told that after the stem cell therapy and neurostabilisation at a neurogen brain and spine centre in India, the baby would recover but this would cost about $7000, something they cannot afford.

Social support
“I have seen many mothers with children of the same or even worse conditions being abandoned by their spouses. But my husband has never abandoned us. He has been there. Her family and in-laws have also supported her.

ADVOCACY
After what she went through, she decided to speak up and provide a platform for several other women who going through hardships. She has started an organization that will see other parents with children of the same conditions share their experiences, provide support to new mothers with such anomalies.
Nabwato will no longer whines about her situation but chooses to rise above the challenges. She is optimistic that one day, her child (Miracle) will be normal again.