Saturday, 7 October 2017

ALL ABOUT AMANDA .

On Tuesday, we looked at a condition known as Hydrocephalus which is also known as "water on the brain" Hydrocephalus is a build-up of fluid inside the skull, which can increase pressure and cause damage to the brain. This story has made me really emotional. 

Meet a mother who has a blessed daughter with hydrocephalus and how she is coping and trying her best to sparkle through it.

This is her story:

My name is Nathalie Tamasha. I am originally from The Republic of Congo, but grew up in Uganda.

In 2014, I went for a gross anatomy test to know the sex of my baby ,I had prayed the night before for it to be a girl. But I was uneasy through the night and was scared but didn't understand why.

During the scan, they found out that my baby had some complications. The doctor informed me my baby had "water on the brain" and that it was a girl.

I could not understand nor comprehend what he was saying. I was just 22 years old at the time and I had never heard of such a condition so, I tried to understand better by asking what could have caused it. He said it could occur if I fell, was hit or been in a fight or it could be genes.

On hearing this, I became very angry, sad and confused all at the same time.
Firstly, when I found out I was pregnant ,I was living with my mum in Uganda. If you grew up with an African parent or in Africa, you will understand my dilemma

When I told my boyfriend then (father of my daughter) the result, he let me realise that it was in his family.
We were advised to abort the baby but we decided we needed to give her a chance to live.

When she was born, we named her Amanda and she looked normal like any other baby . I was so excited and was glad I had kept her. She had full hair and was adorable. I almost believed they had made a mistake about her condition.


At 3months, we noticed her head began to expand. She would cry day and night and this affected me. We both weren't sleeping. I ended up having problems with my nerves.



We decided to relocate to Sweden September last year so we could have better care for her as I was also not getting any support from my mum whatsoever. She would ask me to hide my baby. She called her "that thing" and didn't see her as a child.
Amanda has eating /swallowing problems and if not careful, sometimes food go into her lungs and she has to be rushed to the hospital. She is unable to speak and cannot see. She is unable to do anything herself. But she is my daughter. My child. I cannot imagine losing her.

Amanda in hospital

She was operated on at 8months but, the crying never stopped. The condition affected her growth.
According to the scan results, her brain is 3% compared to a normal person . The rest is fluid.




We were told she wouldn't live for more than three months but God had not said the final word regarding her. She is now three(3) years old.

It has not been easy as her dad hasn't been able to get his visa to come over . I have had to grow up real quick and become strong for my princess.

I know people feel I should have had an abortion but I love my daughter and I will keep caring for her and making her enjoy all she can while she is still here with me. I would love her to be an H & M model if that's possible. Everything she wears is H & M.


Amanda in a sensory room.

My advise to people is that they find out medical history about their to be partners so they know what they are getting themselves into. Also, Africans should change their attitude towards children with special needs /disabilities. They are unique and loving children just like any other child.
Show them love. Show their parents love. Treat them as you would any child. All they need is some extra love and patience .

Nathalie and Amanda

Its a very rough road I'm going through, would love to have support from family and friends if it were possible. But God is with me and is my strength. In it all, I plan to sparkle through it.



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