International Down Syndrome Diagnosis- South Africa

We received a prenatal diagnosis at 23 weeks pregnant for our Luke it all began when we had been referred to a specialist after our routine 20-week scan showed a slight effusion on Luke’s heart. The specialist told us that he wasn’t concerned about the effusion because it usually self repairs during the pregnancy, but what he was most concerned about was the underdeveloped nasal bone. He reiterated that this coupled with the effusion meant that these were two markers for Down Syndrome, and that he recommended an amniocentesis straight away. We found out a week later the confirmation of a Down Syndrome diagnosis when the specialist called us to tell us the news.

I will never forget seeing my husband’s face as he answered the phone and received the news that would change the path of our lives forever. We both felt as if we had been sucker punched, I don’t remember crying, the tears came later, but I remember being in an intense amount of shock and disbelief.
I was so angry. I was angry that my plans had been messed with. I was angry at anything and everything. And I think more than anything I was petrified. I had no clue what to expect, and that made me even angrier.

I had never met anyone with DS before Luke was born and as I result I was pretty clueless and uneducated. I learned a lot, and very quickly. I read and I read and I read some more. As a result of not really knowing much about Down Syndrome I didn’t have any major initial fears as I was more shell-shocked, however, after doing research I started to worry, mostly about health implications. Jon and I were both petrified that our son would have to have major surgery once being born.

Once we had decided to continue with the pregnancy, we had both decided that we had nothing to hide. Right from the very start I have been very open with anyone who is willing to listen. I knew that both of our families and friends would embrace, support and love our son and so I really did not worry at all about telling people. Our friends and family have blown us away with their positivity, acceptance, and support. There was never a single question with regards to questioning our decisions.

As it was a rushed emergency C – section we both didn’t have much time to think. Luke emerged blue and struggling to breathe, Jon my husband, was more concerned than anything as Luke was rushed through to the NICU.

We were incredibly lucky in that Luke did not need any major surgeries after birth. He was in the NICU for a few days to monitor his oxygen absorption rate, but apart from that he was absolutely healthy.
Our biggest obstacle to accepting Luke’s diagnosis was our own pride – letting go of expectations, accepting our new reality and coming to terms with this new adventure.

We currently live in the East Coast of South Africa, we live in a town just outside of Durban called Ballito.
The thing about South Africa is that it is a very complex country with a very rich and diverse culture and heritage. It is, in essence, a first world country mixed with a third world country. There is a very distinct disparity between the haves and the have not’s which is exacerbated by a very poor national health system. An example is that we have 11 official languages in South Africa – it is very, very diverse.
We are incredibly fortunate in that we are able to afford private health care and thus are afforded state of the art first world health care. The very sad thing is that ¾’s of the people in our country are not in a position for this.

With western values and outlooks, we have never come across Luke being ostracized or treated terribly. I cannot, however, speak of children born with Down Syndrome in other cultures within South Africa.

We have only had positive experiences with Luke and other people. We are well aware that at this stage he is still a cute baby and that things may change in the future, but with more and more awareness being spread we are hoping that stigmas will be dispelled and inclusion will be encouraged.

Luke is now 13 months old and he has changed our lives in more ways than we could ever have imagined. He has caused us to slow down, to appreciate the small things and to be grateful for the decision that we chose. We are forever grateful that he chose us to be his parents and we are so excited for the future. Luke’s diagnosis has affected our relationship as a couple in that It strengthened it more than we could have ever imagined. It brought us closer together and has made us feel that we can conquer anything together.

What made me able to move forward and not only accept Luke’s diagnosis but embrace it was meeting my son. It’s very hard to imagine and accept if you haven’t actually seen the perfection that is your child. It was very hard for me not to embrace Luke after staring into his beautiful blue eyes and realizing that he was all mine.

 

 

 

 

Jessica is a full-time working, mother of  13month old Luke Michael and wife to Jonathan.  Jessica says her way of relaxing is to exercise. In 2015 she and her husband and I completed the Comrades Ultra Marathon together (And didn’t kill each other in the process!) Jessica describes herself as animal crazy, being brought up in a home with a father as a veterinary surgeon has meant that she had little choice.  She is also utterly done deaf and feels sorry for poor look when he is subjected to her renditions of nursery rhymes.   Check out Jessica’s blog at Learning from Luke  and you can find her on instagram @learningfromluke.