I am a pretty and confident girl who also happens to have Down Syndrome
This is my personal story which I want to share.
I wanted to do this blog by myself but I am not able to write yet. I am still learning the letters and put them into words. So my mami has helped me to put my story together.
I was born in 2004 on the 21. December. That day, my mami went to the Doctor for a check up and he decided to have me delivered that same day because I just didn’t want to grow anymore.
7 weeks earlier when my Mami went for a check up the doctor saw that I was smaller than what a baby at that stage should be. He suggested an Amnio test be done, so we could see if everything was fine. Oh yes, the results were obviously not what my mami and daddy expected to hear.
They were told that I had Down Syndrome
It was a bit of a shock for my mami and daddy.
When I was born I was healthy but tiny, only 1.6kg. So I had to stay in the Neonatal unit in the hospital until I reached a weight of 2kg. My mami tried to breastfeed me but I seemed to small and weak to manage so she pumped the nice milk out for me.
When my mami left the hospital after 4 days it was Christmas Eve. My parents came to visit me every day and my mami spent a lot of time with me, gave me the bottle, bathed me and cuddled with me. In the Neonatal unit, when on my own, I was lying in one of those plastic beds and fed by the nursing sisters. It was a little boring and I really didn’t like to be there. It was very noisy with all the beep noises from all the monitors.
The doctors also took blood from me every day, they obviously wanted to make sure all was okay. It was sore and I cried when they pricked me. I felt a little helpless.
Neonatal is not a nice place to be. After about 3 weeks in Neonatal the doctors actually found something wrong in my blood and immediately alerted my parents. They had found what are called blasts in my blood and they wanted to perform a bone marrow aspiration to see if it was coming from the bone marrow.
It was hard for my parents to agree to this procedure because it was with no anaesthetic. It was very, very sore when they put a thick needle into the bone of my leg. I was crying and screaming because I wanted them to stop. Apparently my mami and daddy heard my screaming outside of the Neonatal unit.
The results, once again were not good. They told my parents that it could be leukaemia. And so we went to see a Professor Poole at the Johannesburg Hospital for a diagnosis.
So we all went to the Johannesburg Hospital where they again took some blood to see what was going on. In the meantime I was a healthy baby and my parents couldn’t believe anything could be wrong.
This time the results were good and we received great news when Professor Poole told us that they didn’t find any blasts in my blood anymore.
But why the first bad results?
We were told it was what is called ‘Transient Myeloproliferative Disorder’ (TMD),
‘TMD is almost exclusively found in newborn babies with Down syndrome. This condition results from rapid growth of abnormal white cells. The abnormal cells may go away without treatment, or they may need treatment. The choice of treatment or no treatment depends on whether certain harmful characteristics of the disease are observed in the baby.’
What Professor Poole also told us is that I had a 1 in 5 chance to develop leukaemia before the age of 2.
For now my parents were happy and relieved. They took me home and we could be a very normal family.
I was not the easiest baby. I was very active and didn’t sleep very well. I guess I didn’t need a lot of sleep. I wanted to explore and constantly use my legs. And even though I struggled with sitting and crawling I certainly practiced enough. I didn’t give my mami a lot of rest and was very demanding. I also didn’t drink so well, I constantly swallowed air and had to burp all the time and often enough I vomited everything out again. My mami then thought all this effort to get the milk in was a complete waste of time. But what can I say, I tried very hard to please my mami but I also have my own little personality.
When I was turning one I was able to crawl, it was just so nice to be able to go everywhere and I crawled like a champ, using both arms and legs the proper way. That felt so great, moving around by myself, exploring house and garden. I mastered the skill so professionally; I was as fast as the wind.
So now after crawling we need to try and walk. Well, I certainly stood up onto table and couch but I just didn’t get the hang of walking and the better I got at crawling the less likely I was of trying that new skill. My talking was also quite delayed so my mami decided to introduce me to the world of sign language. We started with the simple words like ‘eat’, ‘sleep’, ‘help’ and so on. While my parents showed me the sign they said the word at the same time so I would hear it as well. I mastered quite a few signs and it came easier than talking, and in that way I was understood.
December 2006 came and I turned 2. Then in January I finally started preschool. I was so happy to join the ‘Busy Bee Play School’ in Pretoria, it opened up a new world for me and I was well integrated amongst all the children. All the children were able to walk except for me but I easily managed to follow them when I needed to. I had quite a few friends at the school where I was the only child with Down Syndrome. Often the bigger girls played with me pretending I was a baby, I was just so small compared to the other girls.
In March of 2007 I got very sick and had high fever. My mami had to sponge me down to lower the temperature although I had medication for it as well. My mami took me to the paediatrician. That same day, my daddy called mami, the doctor had called him and said we must immediately pack a bag for me and admit me to hospital. The paediatric oncologist Dr David Reynders was already informed and headed to the hospital to meet his new patient. My mami cried a lot that evening and I wasn’t sure why all this was happening, now I’m not at home anymore, I’m sleeping in a strange bed and there were nurses constantly doing checks on me.
When the doctor came both my mami and daddy were with me at the hospital. He said that the blood test showed I had leukaemia and a bone marrow aspiration had to be done to confirm it. My parents were very sad and cried and cried but still hoped that it was not leukaemia. I had to be monitored very closely that night as I had a very low platelet count and there was a chance of internal bleeding. I also had a blood transfusion before they started any treatment or bone marrow aspiration.
When the results came out, it was ‘Acute Megakaryocytic Leukemia’ (AMkL) which is a kind that is typically found in Down Syndrome.
Treatment had to start the next day, 4 sessions of chemotherapy was necessary over a period of 5 month.
I also had to undergo surgery to have a port put in for the leukaemia treatment. ‘A port is a small disc made of plastic or metal about the size of a 5 cent coin that sits just under the skin at chest hight. A soft thin tube called a catheter connects the port to a large vein. Chemotherapy medicines are given through a needle into the port. One can also have blood drawn through the port’.
So my journey of Chemotherapy started and it was not very nice. There was a lot of bright yellow medicine that went into my little body but I think I took it like a real champ. During the treatment I liked to watch Barney while I was sitting on my bed. I actually ate well and I was as busy as usual. I was still crawling and my mom constantly cleaned my hands. Those little hands still went in my mouth constantly.
After my first treatment I was in remission…yeah, everyone was so happy. From now on let’s not look back what was but rather focus on the future and be positive. I think I was the happiest person in the Paediatric Oncology Ward, I just wanted to have fun and tried to cheer everyone else up. There was not one day during my treatment where I was lying down because I felt sick. I did fall ill with some kind of infection every time after a treatment and I spent many days in hospital but it never stopped me from my mission to have fun.
The whole treatment took about 1.5 years but after 6 month I was able to go back to school. It was a good decision by my mom to send me back to school, even though my immune system was pretty low and I fell ill quite often, I needed some stimulation and being isolated is not the answer. It took my immune system about 7 years to get back to normal after the treatment. Now I am a healthy girl with the same mission, to have fun.
But I also learnt that I need to go to school and try to become as independent as possible. I think I am already quite independent but my mami sometimes lets me understand that there is more to it than just being head strong and stubborn.
My Mami and daddy are proud of me and love my strong personality.