I don't even know your name. You gave me possibly the most life altering news I have ever received, and yet I've never even met you. You called when Noah was only six days old and still in the NICU. You told me that the results of the karyotype had come in and that my son was diagnosed with Down syndrome. "I'm sorry," you said.
There are many things I wish could have been different about the way Noah's diagnosis was delivered. You see, we knew practically nothing about Down syndrome before that day. So the information that you gave us when delivering the diagnosis had a significant impact on how we viewed the condition. It set the tone for our journey with Down syndrome. Unfortunately for us and for many parents, the tone that was presented was a sad one.
I wish we could have been with Noah when we got the news. I understand your desire to give us the information as soon as the test results came in. However, best practices for medical diagnoses encourage doctors to speak with families face to face. Getting the news over the phone was not ideal. I wish you would have waited until we were back at the hospital. A diagnosis of Down syndrome was scary, but my sweet baby Noah wasn't. I needed to see him, to hold him, to reassure him that we loved him no matter what.
I wish our regular doctor had been the one to tell us, our amazing family practitioner who we love and has supported us throughout this journey. I have no doubt she would have handled the situation with encouragement and compassion. I would have felt much more comfortable getting the news from someone that I know.
I wish that you would not have immediately shifted to thinking about my child in terms of a disability instead of thinking about my child first. Even at 6 days old, Noah was being defined by his diagnosis. You told me that "kids with Down syndrome" do this or don't do this. It suddenly felt like he had lost all uniqueness under the blanket of a diagnosis.
I wish we hadn't been overwhelmed with specialists as soon as we got back to the hospital, most of them also saying "I'm sorry", or at least echoing that sentiment. We were sleep deprived, emotional parents dealing with a premature baby in the NICU who we just found out had Down syndrome. We needed real support, not half a dozen people filing through our room telling us the challenges that Noah would face, the ways he would be delayed, the therapies he would need, the resources we would have to fight for.
I don't wish that you would have left out all the hard stuff. We needed to hear that too. We needed to hear the realities - the potential medical issues, the delays, the struggles, the facts. But you didn't have to stop there. You could have told us it would be ok, that there would be so many positive things as well. That Noah's smile would light up the room. That the struggles would result in hard earned celebration. That a strong community would be formed around us, giving us lasting friendships and listening ears. That Noah would bring us so much joy. That it would be so fun to see Noah teach things to his little brother, and that he would teach us too, in so many ways. I'm not saying that you should have sugar coated it, but rather given us a balanced perspective.
Most of all, I wish you wouldn't have said "I'm sorry". You should have told me that the road would be different, but not bad. Not something to be sorry about. I wish you would have told me that while it might be hard at times, it would be okay.
So doctor, whoever you are, I hope that when you deliver this diagnosis in the future, you think about the way you are starting this journey for a family. You have the power to begin their journey full of hope rather than sadness.
A loving parent
A 2013 study found that for every parent who had a positive #downsyndrome diagnosis experience there were 2.5 parents who had a negative one. We can do better.
I'm Jessica, mom to 3 lively boys. Our second son, Noah, surprised us by arriving 5 weeks early and with an extra chromosome. His Down syndrome diagnosis kind of rocked our world at first. The whole experience has shattered our definitions of disability, success and happiness (to name a few) in a good way. When I have time amidst the chaos that 3 boys brings, I blog about our journey at http://voetmannfamily.com/
Connect with the Down Syndrome Diagnosis Network (DSDN) if you have a young child or are expecting a new little one with Down syndrome for information, connections and support. www.dsdiagnosisnetwork.org
Are you the parent of a child with Down syndrome? Let your doctor know how they did delivering the diagnosis, anonymously, by participating in DSDN’s Physician Feedback program.