BMD: May we meet you?
I’m Nathalie Tamash from Congo. I’m based in Sweden and I work at the Intergration as an assistant in our municipality.
BMD: What your marital status?
I am engaged to my best friend.
BMD: We believe Amanda is your first right?
Yes, Amanda is my first child
BMD: Tell us about your pregnancy…
My pregnancy with Amanda was very fine, no complications at all, in fact, I never felt pregnant, there were no pregnancy signs.
BMD: Did you had any weird pregnancy cravings?
I never had any cravings at all.
BMD: Which trimester would you say was the hardest?
My last trimester was the hardest when I found out Amanda had water in her brain. It was a very very hard situation for me.
BMD: What would you say was the most difficult part of your pregnancy?
The most difficult part of my pregnancy was finding out about my daughter’s sickness and the time my mum found out I was pregnant, she threw me out of the house.
BMD: Share your labour room experience with us..
Well my labour room was very different from most mothers, first I gave birth to Amanda when it wasn’t the time yet, it was 5 days before her due date, so I never fell in labour. Doctors told me they had to remove the baby before time because they thought she had a huge head, if I was to fell in labour maybe it would be very hard and complicated so instead I had a C-section.
BMD: How would you describe the whole birth experience?
The birth experience was quick and easy I would say, though I am suffering from the paralyzing injection I got on my spinal cord.
BMD: When was your little one born and when was she first diagnosed with hydrocephulus?
Amanda was born on 4th July 2014, and she was first diagnosed with hydrocephalus when I was 7 month pregnant.
BMD: What would you say is the cause of the disease?
Well the cause of hydrocephalus in every child differ, but in my case her father told me it was a problem he has because years ago with his first girlfriend who got pregnant at 5-month they discovered the baby had hydrocephalus too though they aborted it.
BMD: When did she had her first surgery and how many has she had so far?
Amanda had her brain surgery at 8-month-old and she has so far had 3 surgeries including 2 brain surgeries and one belly surgery so far.
BMD: How expensive are these surgeries and how do you raise the fund?
The two brain surgeries she had then in Uganda at the cost of $500 each was paid for by her father. The belly surgery she had here in Sweden for free.
BMD: What type of hydrocephulus is Amanda suffering from?
Amanda doesn’t have hydrocephalus but ‘hydranencephaly’ where by with hydrocephalus a baby has some water on the brain but Hydranencephaly, there is no brain it’s only water. It’s said she has 3% of brain and 97 % is water.
BMD: What are the other problems associated with hydrocephulus?
Other problems associated with hydrocephalus (hydranencephaly) are blindness in some kids, dumbness, delayed growth, pain due to pressure of the water in the head, problems with eating and many more.
BMD: What would you say is the over all outcome of hydrocephulus?
The overall outcome of hydrocephalus/hydranencephaly is a dormant being.
BMD: How does it feels parenting a special need child like Amanda?
Parenting a special need child like Amanda is a gift from God. It is very hard but at the same time if you can understand the voice of God then you will feel blessed among women, it feels special, I feel like a hero.
BMD: What are the highs and lows of being her mother?
The high and lows of being her mother, I feel very proud and brave, not every woman would keep such a child because it is a very rough road, I am always proud talking about her journey to people because I know it inspires them but then at the same time it gets too hard for me, like missing out at work because I have to be in the hospital with her were they will cut on my salary, I was a fashion model, at times I get well paying modeling jobs but Amanda limits me. I do cry alot, I do lose hope at times but I guess so is life.
BMD: Why did you choice to keep her after she was diagnosed with hydrocephaly at 7 months? I mean you could have aborted her like her father’s ex did!
Well, first things first, abortion is a sin! No woman would happily abort her first grown up pregnancy. I believed she deserved a chance to life just like me.
BMD: Who would you say has been your biggest support system?
My biggest support system are my three younger siblings first they were there for me always and my big brother, and my current man (who is not Amanda’s father).
BMD: What is a typical day like for you?
A typical day for me, hmmm! Giving Amanda shower (30 min) giving her food (6 times a day at 1 hour each meal) giving her medication three times a day, massaging her legs and arms, playing with her, changing her all the time, cooking, in fact, by the time I go to sleep I’m dead tired. All my days are tiresome days.
BMD: What is your biggest lesson learnt?
I learnt that God never give you anything you can’t manage and love conquers everything. We only discover how strong we are untill being strong is the only option we’ve got.
BMD: What are your expectations for her?
I have no much expectations for her, I just want to see her happy and comfortable in her condition.
BMD: Is Amanda’s father involve in her up bringing?
Hmmm Amanda’s father was there for her financially up to 2016 but never physically since she was born yet we lived 1hr from each other, but money is not everything the physical presence matters alot especially to a child who needed both parents the more.
BMD: Do you plan on having more kids?
Yes I plan on having two more kids
BMD: What is the most ridiculous thing you have been told since welcoming Amanda?
The most ridiculous thing I was told by my mother was “how can you proudly show that thing to your cousins? Will you also say you gave birth to a baby or a ‘thing,’” those words pierced my heart deeply.
BMD: Does that mean she isn’t supportive of you?
I respect and I love her so much and there are many things I just have to keep personal but yes she never supported me rather she added to my pain by discriminating my child who is her grand daughter.
BMD: What is your relationship with her?
We were very close like two little small gossipers but its not the same since Amanda’s existence.
BMD: Have you ever lost friends because of her condition?
No I never lost any friend because of her condition rather they pitied me and kept closer.
BMD: Do you ever feel embarrass by her condition, especially in public?
My dear I have never and will never be embarrassed. On the contrary, I am always proud of her, showing her off and gladly reply to anyone who is curious about her condition.
BMD: Do you believe in miracle?
Yes I do believe in miracles and I always pray for one. I also believe she can be healed in Jesus Name.
BMD: What advice would you give to parents of special need children like Amanda?
Well, my kindly advice to parents with special needs like Amanda is if you are doing the best for your child keep doing what you are doing, lets accept and love our children, that love we show them helps in their healing process and God will see us through, remember “Love conquers all and only hard battles are given to strong soldiers”. We are the Heroes of our children.