Well our story is a bit of unique one, in fact I’m pretty sure there are not many like it.
I’m Hayley originally from Wales Uk, and in 2008 I traveled to Tanzania for what was meant to be 8 weeks of volunteering. Well, a husband, a successful business and two children later and here we are. We live in Tanzania, running our art business and raising our beautiful family, and also travel to the Uk regularly.
Reagan and I met shortly after I first arrived in Africa, and we became inseparable. He was a struggling artist working on the streets and I bought one of his paintings. We worked incredibly hard to start our business, got married two years after meeting and exactly a year after that our first baby Skyler was born. Our chilled out, smiley baby who grew to become the sweetest, kindest and wonderful little boy.
Three years after that River made a flying entrance into the world and gave us everything we didn’t even know we needed. He flipped our world on its head and it was the best thing that could have happened to us. We didn’t know River had Down syndrome until he was 6 months old. We had travelled to the UK for the birth because hospitals here are just not up to standard and we remained there for the first 3 months of Rivers life. I had a wonderful pregnancy with no worries, an uncomplicated home birth and a labor that lasted a little over an hour.
Everything went fantastic, but I suspected when River was born that he had Downs syndrome. I could just feel it. I’d sit there looking at photo’s, just trying to see the characteristics. When he was about 3 weeks old at a home check-up our midwife suspected something. She never said she suspected Ds but I knew she did. We went into the hospital and they just looked him over and told us he was fine, they never even gave us a blood test. I think because he was a strong baby, they just didn’t suspect it. He went for many appointments, check ups, and for months it was completely missed. We saw a breastfeeding specialist as we had a real struggle with that, and even when he failed his hearing test three times nobody thought to test him for Down syndrome. But I knew, I just didn’t want it to be true so clung to the fact that these professionals were telling me he was ok.
It wasn’t until we had moved back to Tanzania and took him to a private Kenyan hospital that we finally had him diagnosed. The doctor just looked at him and immediately knew He had Down syndrome. We couldn’t have asked for anything more from that doctor, I will never forget how comfortable he made us feel and how positive he was. He just told us to love our baby like any other baby and to enjoy him. There was no sadness or pity from him and I appreciate that so much. Luckily River had no health complications and other than a few digestion issues was a very healthy little boy. We actually celebrated that weekend and had a brilliant family trip away.
Nothing changed for us really after the diagnosis, we had been blessed with 6 months of just getting to know our new baby and we already knew he was amazing. We did take a small amount of time to grieve I guess is the word. I felt like I needed to mourn the life I thought he was going to lead, but I actually picked myself up really fast. We hadn’t had the initial fear of being told at birth, we hadn’t had to face the numerous medical tests or been overloaded with information about the things he would never do, or the health complications he would face. Right now River is totally healthy and of course we hope it always stays that way, although we will face what the future holds for us together. I’ve never felt any shame about River, am totally open about his diagnosis and love talking about him. I feel it’s my job to make the world more educated for him and give him a voice.
Living in Tanzania with a child who has Down syndrome is both a blessing and a struggle. Here River is just River, he has a very ‘normal’ childhood and his diagnosis is rarely mentioned.
But something did become apparent to me, you just don’t see that many people with Down syndrome here and I wanted to know why. Abortion is illegal here, so where are these children? The truth is hard to hear, as for the majority of the time they are hidden away from society or at worst, abandoned and killed. From what I could see online there are a few organizations trying to make a change and I intend to spend some more time looking into these. However, they are few and far between and it’s going to be a long road.
We opened our new store in Mweka village last, at the bottom of Mt Kilimanjaro and we quickly found out that there are in fact 4 adults living there with Down syndrome. They just don’t know that’s what it is! We met the lovely Abuchu as he daily came to the building site to ask for jobs, and he still visits daily now it’s finished. Although he’s usually asking for beer now!!!! We found out recently that he has a sister who also has ds and that up until 4 years ago they were locked away in a room at home and never left the house. He is in his thirties. There is a lot more to that story, but it’s not my story to tell. Abuchu however is a loved member of the community, but it has become very clear that nobody knows what Down syndrome is, they just call him crazy. I look at him and wonder what he could have achieved if he had just been given a chance. He’s a funny guy and talks so well, imagine if he hadn’t been locked away for most of his life!
This is what I’ve come to realize about Down syndrome in Tanzania………
- When a child is born here with Ds, the hospitals have no idea how to deal with it. There is no training for medical staff and a lot won’t even know what it is. There is no counselling, nowhere to get information, nobody to ask about medical issues often common with Ds and nowhere even to get the medical help if it’s needed. I heard a story about a lady giving birth in a local hospital and the staff refusing to touch the baby, believing it was cursed using witchcraft. It is completely heartbreaking to think about.
- Often when a woman gives birth to a child with Down syndrome she is shunned by society. People believe witchcraft is involved and that the mother has been cursed. It is common even for the father to leave a ‘cursed’ child and wife. Along with this, children are often hidden; families are embarrassed and ashamed, locking their children away.
- Nobody with ds is in employment; there are no plans for independent living and no support in decision making, voting or human rights. There is no provision of formal education, and even if a child manages to go to primary school, that is where it will end. Children are then often sent to ill equipped centers to learn ‘skills’, although most will never receive any education at all. Colleges here do not accept people with learning difficulties; if they did it would enable them to learn a real skill, to live a life.
- There is no data available on the number of people in Tanzania with Down syndrome, nobody has any idea how many exist. It is really hard to highlight the need for support for these people and their families when their life isn’t even acknowledged.
- Even if a person were to be diagnosed with Down syndrome, there is no care for them here. No medical professional has experience or knowledge, so they have no idea what the health problems relating to it are. Plus the medical facilities are just not good enough to deal with some of the major health issues such as heart conditions. Physio, speech therapy and even education would never be offered.
As awful as this is to read, River really does have a wonderful life living here. He is loved by everyone who meets him and I’ve never had a negative experience. I’m sure that many people don’t realize he has ds, but everyone we know has been told and accept him. In fact, they bloody adore him!
I admit that Rivers life is completely different to a local Tanzanian child who is born with ds, we can afford to take him to a great private hospital in Nairobi and send him to a great international school where he is already very loved. He has freedom to play and explore outside every day and we have a very relaxed life. He is now two years old and thriving, he’s not walking yet but crawls like a pro and can climb everything. He’s extremely mischievous, funny, smart, determined, sweet and we wouldn’t change him for the world.
I like to believe that Rivers life is educating people here, that it is part of his journey to show the people he meets that having a disability is ok. To show the community that people with Down syndrome are worthy of love, care and respect and they have something to offer society. He is showing people that everyone has the potential to do great things and live wonderful fulfilled lives, if only given a chance. I want people to look at River and see how happy and loved he is and want that for their own children and anyone within their communities. If a woman has a baby born with Down syndrome, they may just think of River and know that they don’t need to be hidden away from anyone. They may remember River and realize that their baby still has a place in this world.
I believe Rivers place in the world is to show people possibilities!
Rivers diagnosis feels like so long ago. Since then we have just carried on with our lives, and it’s a wonderful life that I wouldn’t change for anything. We’ve learnt so much from River, he is our biggest teacher and has shown us what life is really all about. Yes he has Down Syndrome, but it’s such a small part of him. He is River, a brother and a son first.
I started a Facebook Page for River (I am River) 6 month ago and enjoyed it so much I thought I’d give blogging ago. I have found writing about our experiences and my thoughts really therapeutic ,as if getting it all down on paper helps organise my mind.
Having a child with down syndrome can be a mix of wonderful moments and constant thoughts of whether you are doing every possible to give them a great life. I guess I’ve found that getting all the thoughts written down my mind can be clear and focus on the positives. I want to show the world that Down Syndrome is nothing to fear, in fact it’s pretty amazing. Can it be hard? Yes. Can it be a worry? Yes. Is it worth it? Absolutely!!!! The good by far outweighs the bad and I wouldn’t want to swap places with anyone.