We would like to introduce our son Liam to everyone that visits our website. He was born February 1, 2018. Around 11 weeks into the pregnancy we got a call from the doctor that we needed to come in to discuss the results of the pregnancy screening blood work Tracy had done. Our doctor sat us down and informed us that the test came back positive for Trisomy 21, also known as Down Syndrome. He went on to inform us of our options. He referred us to a specialist and we were on our way. To say this was a shock is an understatement.
Once we got over the initial shock and all the what ifs, we went on to see the specialist. This doctor was a geneticist and we were seeing him to confirm the diagnosis. While we were meeting with him, Tracy and I kept getting this feeling that this doctor was trying to point us in the direction of terminating!! What gave him this idea? Granted we were blown back by the diagnosis, who wouldn’t be, but at no time did terminating cross either one of our minds. The tests done that day were not 100% conclusive, but we left there feeling confident that the diagnosis was correct.
After this appointment, I can’t count how many times Tracy and I spoke about how that doctor seemed to be pushing towards termination. We wondered if he did this to every mother/father who came to him with this diagnosis? Was this normal practice? Why wasn’t there more positivity or focus on what possibly wasn’t wrong with the baby?
After weeks of researching and sifting through all the doom and gloom on the internet, I concluded that this was normal, not only for doctors but also a lot of the public. My question was why? We live in a society now that is more accepting than ever before, so how could this be? The answers that I kept coming up with were lack of knowledge and misunderstanding. The lack of knowledge seemed to lead to the misunderstanding.
As I was reading remarkable story after remarkable story I realized one thing, these kids, yes delayed, can be just as successful as typical kids if giving the resources and most all the opportunity. There wasn’t anything that these children couldn’t accomplish with a lot of work and a little patience. This sounded exactly what parenting should be. With a lot of work, comes a lot of reward. I also realized what amazing and caring adults these children become.
This got me thinking…. What could we do to help parents who are in the same situation as we get access to the resources that will help them fully understand that this diagnosis is not the end of the world. In fact, it’s just the beginning of a world you couldn’t have imagined in your wildest dreams. Also, what could we do to educate the doctors on how to better deliver this diagnosis.
