Dear Doctor, You Told Us Our Daughter Would be a Vegetable. Really?
Five years ago this week, my husband and I came to you looking for answers related to the health of our unborn baby's brain. You see, weeks earlier, our quad screen had indicated that our baby girl would likely be born with Down syndrome, though ultrasound findings indicated that she also had hydrocephalus, a contradictory finding that puzzled everyone.
We refused further invasive prenatal testing because, after nearly three years of desperately trying to have a baby, a Down syndrome diagnosis was the least of our worries, all that we wanted was for our baby to come into this world and be compatible with life - that was all that mattered.
Thank you for never pushing us towards further testing or suggesting that we terminate our pregnancy - you respected our values and never uttered such thoughts. You did, however, suggest that our baby, if she did, in fact, survive, would likely be nothing more than a vegetable in this life. Really? Who does that? I am very much a realist (and a medical professional myself), but I also see great value in always leaving desperate people with hope - it's like an anchor. Why couldn't you have given us so much more hope for our girl? For all that she could be. All along we had unfailing hope - it's the only thing that got us through - it just would have been nice if you would have gotten on board too.
I only wish that you could see her now.
If we still lived in your neck of the woods, we would bring her by so that you could meet her - so that everybody in your practice could meet her; I'm certain that you'd be blown away, immediately after you finished putting your foot in your mouth. Our girl, brain malformation and all, is anything BUT a vegetable! She is incredibly bright, stunningly beautiful, and has a heart of pure gold.
She is the daughter of our dreams and her brother's greatest confidant, and best friend. The lives of countless people have been forever changed for the better because of her. She spreads sunshine everywhere she goes and not a moment goes by that we don't count our blessings, forever thankful that she is ours.
Thank you to the doctor who compassionately delivered our baby girl's Down syndrome diagnosis after her birth and shared in our joy when we celebrated that she had arrived, was healthy, and was more than compatible with life - she was our dream come true! Every parent deserves to have their newborn baby celebrated - regardless of how many chromosomes they come into the world with. Every life is precious - has value - has worth!
What words of advice would I impart on any doctor or geneticist delivering a Down syndrome diagnosis? Educate yourself on how to properly deliver a Down syndrome diagnosis. Words truly do matter and compassion is everything.
Learn about what life looks like today for individuals with Down syndrome and their families, rather than hanging on to old, outdated information and stereotypes. Provide your patients with relevant information and always put them in touch with a family who is actually living this life - they deserve to learn about how joyful this journey truly is. Finally, always give your patients hope, even when medical reality of the situation may suggest otherwise. As a fellow human, you owe your patients and their family this much.