Ruth Nalujja went through the whole process every pregnant mother does.
The scan showed that her baby was fine until the last months when her gynecologist told her that her baby has hydrocephalus (water in the head) but didn’t tell her about the spinal code problem.
Her daughter Blessing Kerstin,6, has to endure applying a catheter in her bladder 5 times every day among other things.
She shares her story with ChimpReports.
After giving birth, I noticed that my baby had a swelling on the back.
None of the nurses told me anything though my instincts showed me something was not right.
The next day, the baby was taken for a surgery to close opening on the back.
Later I was told that my child also had a multi formation of the spinal code (Tinabesta).
Children with these conditions don’t control their bowl movement and bladder.
My daughter suffered the same.
All I would do was wonder how life would be like having a child who cannot control their bladder or bowl her entire life.
Before three months, she had undergone three surgeries – something that tortured me as a mother.
While at Cure Hospital in Mbale, I was told to start training the baby in the life she will live. I was asked to insert a catheter in her bladder after a little training.
I wasn’t prepared psychologically to do this. It was the most traumatizing experience I have ever gone through, and I think the most disturbing thing every mother would go through.
I remember shedding tears with the catheter not knowing what to do.
However, I had to be strong for my baby. I started accepting the reality in the first month.
I would visit Katalemwa center in Kalerwe where we did physiotherapy and learnt to train her in different exercises as she couldn’t walk in the first days.
However, meeting people with the same problem made me stronger.
I came out and shared my experience which reduced the emotional torture I was going through.
Talking to different mothers with the same problem helped each of us learn the different tactics to handle our children.
Raising such a child is the most challenging thing every parent has to go through.
It is a permanent condition that a child has to go through their entire life.
Blessing has to apply a catheter in her bladder five times a day because we have to protect the liver.
I trained her well and she can now do it herself. I have to pump water in the anal area every day to clean her intestines to control her bowl movement. It’s very disturbing for the child to go through this every day.
Opening up an organization
Seeing how coming together was helping us emotionally, I spear headed the formation of an NGO called Parent Support Association in 2014 which currently has more than 500 care givers.
Our offices are between Namirembe church and Namirembe guest house.
In this organization, they work on people’s capacity building especially the youth and children going through the disorder and preparing mothers for what is to come.
We also train children on how to live positively despite their condition.
What causes it
Research shows that water in the head is caused by congenital infection in children while multi formation of the spinalcode 70 percent is caused by lack of folic acid in the body.
This is the reason women are advised to eat more of folic food before consumption as well as the adolescents who have just started their menstruation period.
Companies that deal in food manufacturing of items like vegetable oil and wheat flour are urged to fortify their products to reduce the risk of such conditions.