My son Ezra was diagnosed with severe haemophilia A just a few days after birth. When he was circumcised and the wound bled for several days. Haemophilia is a genetic bleeding disorder, which I had never heard of before. I was a first-time mom, and dealing with the normal challenges plus the unknown implications of a special needs baby.
I was in severe shock for quite a while. Doctors and nurses at Charlotte Maxeke were so helpful and supportive, but I felt completely lost in a sea of information. Those first few months were a haze of tears.
Getting in touch with other moms and haemophilia patients on our Facebook Support Group opened a world of hope to me. I started getting involved with the South African Haemophilia Foundation, and got involved in the lives of many parents in the same boat as I was.
Haemophilia boys (it only affects boys) are in danger of external bleeding (due to injuries, or sometimes these happen spontaneously) as well as internal bleeding (like bruises and sprains). Repeated bleeds in a joint can lead to permanent disability.
Raising a special needs child has many challenges. I’m lucky because my son can live a normal life – we just need to take the necessary precautions. These include bi-weekly infusions where I inject him with Factor VIII. Factor VIII is the blood clotting factor his body doesn’t produce. In the beginning, doing this was super scary, but it is now a part of our routine; it doesn’t even faze us.
In fact, Ezra looks forward to this, because it’s the only time he’s allowed to play on my tablet. He sometimes “fakes” an injury so that he can get injected! It can take a while – from preparation and sterilization of the environment, to the actual injecting. The aftercare takes about an hour and a half – and we need to do this twice a week. We have regular slots to do this, but as a working mother with a small baby as well, it can be quite challenging.
We can’t ever just go to a birthday party where there will be activities such as a jumping castle without taking some precautions. I always carry ice packs with me, and if we go further than 2 hours from home, I always pack factor and medical packs for injecting. Although we deal with the realities and practicalities well, Haemophilia is always on my mind.
When something like this affects your daily living, it is natural to want to tell people about it. And this is a good thing. Raising awareness is a personal quest for me – I even had one of Ezra’s bruises tattooed on my arm. This is a great tool – people often ask me what happened to my arm (with shocked faces), and I take this opportunity to tell them about haemophilia. In South Africa the statistics of undiagnosed boys are shocking.
These boys (mostly in rural areas) get many bleeds and end up with critical permanent injuries, which could be easily prevented if the people around them (including medical staff) had known about the disease. This really makes me sad – I wish I could do more to reach out and spread awareness.
We were lucky that Ezra was diagnosed so early. We could give him treatment before he really needed it (babies crawling and walking cause lots of bleeds, and we were able to treat all these before they became problematic). But haemophilia does cast a dark cloud over our lives.
My son sometimes asks why God gave him this. He accepts the answers, but I know there may come a time when he will resent his “being different”. The diagnosis and early days took its toll on our family, and I went through dark days. I do feel like it has also had a positive impact though. My extended family of bleeders I met through the Haemophilia Foundation has really made a positive impact on my life.
“I grew up black in a predominantly white suburb on a road where my family and the neighbours were the only black families. Despite this we grew up without feeling any racial tension and the school we attended was a mix of all races.
In primary school my best friend was a white boy named Dale, and from the time we were young we would spend time at each other’s houses and often had sleep-overs – race was not an issue for the first decade of my life. When we moved to high school, he and I parted ways and I went to a predominantly black high school.
In a class of over 40, I was the only boy from the suburbs and that began my time of always being an outsider. Since I had grown up in a white suburb, English was the language I spoke the most and I was not very fluent in Ndebele (what they call my mother tongue). I was assigned the label of msaladi (the equivalent of “coconut” in SA, literally because they say guys from the suburbs would eat “salads” at parties)
As the “salad” guy it was natural that I was able to befriend the few white students from my neighbourhood who went to the same high school. When we were in our third year of high school, a white friend and I went to his girlfriend’s house to hang out. We were dropped off by my friend’s mom and all seemed well until at school the following morning my friend told me that his girlfriend’s mother said she did not want any black people at her house.
Up until then racism was something that I had only heard about, but that time it became real. Amazingly, I was relatively unmoved. Having been raised in a family where my brother was married to a white woman and knowing that there were good white people in my life countered the one bad experience I had had.
Being An Outsider
In 2008, I was scheduled to arrive in South Africa to study. We were excited until one evening we watched the South African news and xenophobic attacks were reported to have flared up. Immediately my travel was put on hold as we monitored the situation closely for a month till we were assured the situation was “safe” again.
When I eventually did travel to SA, the image of a burning Ernesto Nhamuave always stayed in the back of my mind. That image has resulted in my opting to rather blend in and keep my head down. Initially, few knew where I was from and it was never because I was embarrassed about it but because I feared for my safety.
Being a foreigner in South Africa during 2009 was a lesson in what segregation laws were like but it also created a serious mistrust of various officials. Everywhere I went I had to carry my passport because police would routinely stop me and ask for identification. A certified copy was also never enough and on several occasions I was bundled into a police van, taken to the police station and only released after paying a “release fee”.
It was also not unusual to get a call from a friend, family member or someone saying they had been picked up for not having their passport, or someone whose friend had been taken into police custody and needed money to help get them out.
In 2013 a taxi driver was dragged behind a police van and the same taxi driver (Mido Macia, a foreign national) was found dead in police cells. In 2015 xenophobic violence again reared its head and while I never saw the violence myself, I am constantly reminded that few things separate me and the victims of these tragedies.
Daily I live with the thought that I, too, may find myself in the wrong place at the wrong time, guilty of being a foreigner. As a result I prefer to avoid certain places and unnecessary interactions.
Few things separate me and the victims of these tragedies.
I was in a taxi that was playing music from my country. Even though I was extremely excited to hear it and wanted to talk about the artist with others in the taxi, the images of Ernesto, Mido and others like them are forever etched in my mind, reminding me that not everyone will embrace the diversity we boast about in South Africa.
Despite all that, this is still where I have built a life, positively contributed to communities and found love. It is the place I call home.