Mayte – Down Syndrome

Mayte and Coen

When I was pregnant with my oldest there was a Star Wars marathon on the TV and I decided that I liked the name Anakin.  We were living in the UK at the time and when I started labour we headed straight to the nearest hospital.  I pushed for a long time but apparently I was pushing wrong, contracting my stomach muscles rather then pushing down like ‘doing a poo’. I was never under any pressure to have a c-section and coped really well with the pain.  When it got too much I had gas and air but I didn’t like it as it made me feel lightheaded.  I just wanted to push and be in my own space and get the baby out. 

When I became pregnant with my second son we had moved to Bahrain and again I had a quite an easy pregnancy.  With the benefit of hindsight I think that something was spotted on the 12 week scan. The doctor who was doing it, measured something, checked it again and then he wrapped up really quickly – very quickly bash boom out the door, so fast that even my husband asked if everything was ok and we were assured that it was. I went to every appointment, took every blood test.  We don’t know if nothing was said in case we decided to not to go ahead on the pregnancy but that would have never been the case, but we were never given any indication that anything could be wrong.

On the day he was born I woke up with a bad back and thought that it was sore from being in the AC. Aneil went to work as I told him that I should know if I’m in labour so not to worry! Anyway, I called him literally as he got to work to say ‘yes, the baby is coming’ and he turned around and we went to the hospital. Coen’s labour was about 5 hours and it was so painful as it just seemed like I was having one long contraction with no rest at all! I was told to push 3 times and 3 pushes later out he came.  He was checked, put on me for skin to skin and everything was fine! No one did anything other than the normal checks so we assumed that everything was ok. 
The next day I was looking at him and I thought that his eyes didn’t look like they should; Anakin had such huge eyes and Coen just looked different.  I asked Aneil if he thought that Coen may have Down Syndrome – he said he has just been born and all newborns are a bit squashed! I asked the midwife and she didn’t know. A doctor came and checked him and then another doctor came and they decided to send a blood test to Dubai which took 21 days to come back. 

So we waited for 3 long weeks – calling the laboratory to see if they had any news was so hard.  One of the things with babies with Down Syndrome is that they can be really hard to breastfeed as they have an inverted jaw, but he fed really well from the start (and 20 months later is still feeding). Aneil and I got into a race to see who would get the results first (he won) and that was that.  Just a diagnosis ‘your son has Down Syndrome,’ no help offered. We took him straight to the hospital as it is very common for children with Down Syndrome to have problems with their hearts and we had already had a three week delay in case there was any issue – luckily he was fine.  We have had him tested for everything in all the hospitals here in Bahrain and he is just a normal, happy healthy little boy.  

We had had a long time (and if you are waiting for news about your child then anytime is a long time) trying to find answers, trying to prepare ourselves for a serious diagnosis, trying to expect positive news.  It was hard, the hardest thing that we have ever gone through – wanting to give him the welcome he deserved but not quite able to as we didn’t know what was going on, it was really stressful.  We were given no information about life expectancy so I thought that I had a son who may not live past his second birthday.  I will never get that time back and all because no one was prepared to talk to us like human beings, like parents, to tell us what the future may hold.  The only difference telling us the news of his diagnosis earlier would have made is that we would have grieved and had our meltdown before he was born, when I had just one son at home and wouldn’t have had to juggle such shocking news with the demands of a young family and then been prepared and had things lined up so we could see the people that we needed to see.  Its not difficult to treat people how you want to be treated.  Its been hard to get support because as an expat we cannot use local charities for assistance.  I firmly believe that he has the same rights as his brother and we are happy to work with anyone, so whatever the future holds for him, we’ll be ready.
January 2019