Tshiamo's Story

Jun 2012

Our daughter Tshiamo, turned 9 on the 13th June this year. She was born in the Chris Hani Baragwaneth Hospital by Caesarean section at 37 weeks. It was my first pregnancy, so I did not have the experience to ask common questions like “Is there enough movement in my tummy?” when there were some movements.  When she was born the doctors were immediately concerned about her floppiness.  They placed her in an incubator for a week while they ran many tests on my baby. I visited her everyday but as she was not able to suckle by herself, I had to feed her with a cup.  Sometimes I tried to get her to breastfeed, but she was always sleepy.  She just lay there, not crying much.

With the help of the nurses we taught her how to suckle from a bottle.  After a week or so, Tshiamo was finally discharged from the hospital, but we were still waiting for the test results.  We took her for check ups and after two months Dr Ramdin had the test results.  He told us that our baby had Prader-Willi syndrome.  We had not even heard of this syndrome, so Dr Ramdin gave us information about it (not many doctors know much about it) and gave us the knowledge we needed about the future challenges in our daughter’s development.  Because of this, we can now be the best parents we can for Tshiamo.

Tshiamo 8 months old
Tshiamo 8 Months old.
Tshiamo in her school uniform
Tshiamo in her school uniform.

We were very scared, because despite the information, we really did not know what we were dealing with. Sometimes you think that God is punishing you with this situation, because it has never happened in our family before and we were not prepared for this kind of circumstance. We desperately needed encouragement and support, and we thank our families for understanding that our child is not like other normal children her age.

Dr Ramdin suggested that we see a paediatrician called Dr Parbhoo, at the same time in hospital.  When we took her there, the paediatrician confirmed it, that really it was PWS.  We were told that as our child develops, we would need to take her to a psychologist, a dietician, physiotherapist and a speech therapist, as she would have very slow development compared to other normal children. After taking her to these therapists, we saw that there were some small improvements. She started walking on her own at about 20 months, making baby noises - she was a very lovely baby!  

 

At around about 36 months we noticed that Tshiamo was beginning to gain weight.  This raised Dr Parbhoo concerns and he referred us to a dietician.  She helped us to draw up a meal plan for Tshiamo, telling us we should cut down on her food intake.  Dr Parbhoo also suggested that Tshiamo should take growth hormonal injections, but we were reluctant at first because we did not know the side effects of it. He told us about the sleep test that she had to undergo to check for the risk of sleep apnoea, as well the effects that PWS might have on her spine.

Dr Parbhoo was still doing research on the potential side effects of the Growth Hormone treatment.  We had doubts and were concerned that the disadvantages were greater than the advantages. The treatment would have to be taken everyday. Finally, we agreed to have the Growth Hormonal treatment, as we were convinced that it would help Tshiamo’s development. We started the treatment when Tshiamo was 6 years old, and we have seen good progress in her development since then.

The difficult aspect of PWS is when we visit other family members in their homes.  They don’t understand that this child has to be under constant surveillance when it comes to food.  They forget that we can not allow her the goodies that normal kids have, and on the other hand she too can’t understand why she cannot have these goodies. She is stubborn by nature, but we have managed to teach her that she can’t have everything that other kids eat.  At least we can be grateful that she hasn’t started waking up at night for something to eat.  We are also pleased that Tshiamo is very active and she plays with other children.  She likes to dance, play with her dolls, playing outside and walking.  She even exercises with her mother and they attend a gym every day.

She started nursery school when she was four years old up until the age of six.  She coped very well at the school, and she is currently doing Grade 2 Special at the Sparrow Foundation School.  She still has challenges in some areas at school but over all I think she is coping well.  Tshiamo brings joy to our lives everyday; she is very talkative but always concerned about the well being of others. However, if she does not want to do something, she won’t!  She is a very sociable child and loves to visit other family members - she is a very lovely and adorable child.  Even when there are sport days at her school and she will try and participate.  But best of all, she loves to colour in - I think that one day she will become an artist.

We are grateful to have a very support and understanding family.

Tshiamo with her parents on her second birthday
Tshiamo with her parents on her

second birthday