To the Doctor Who Announced Our Daughter’s Diagnosis via a Voicemail

Hello, Bob*

This letter is six years late. You’ve since retired as a pediatrician. And I shouldn’t even have to write this letter, because you shouldn’t have left us a voicemail telling us our baby had tested positive for Williams syndrome.

See, I’m still so angry. For six years I’ve carried a chip on my shoulder with your name on it. But no longer. This letter is me tossing that chip back in your face and moving on.

Here, for your benefit, is the etiquette of a voicemail message: state your name and politely request a callback. Voicemail messages should be from the local garage, saying your car is ready to be picked up. Or from the hairdresser, to confirm an appointment.

Not announcing a life-changing diagnosis of a genetic condition.

Your message was picked up by me, on a rainy night in April, a month after the blood test. We’d talked ourselves into believing everything would be fine. My husband was putting our 9-month-old to bed while I fixed dinner. The TV news was on. All of a sudden, I looked at the phone and had a feeling. I picked up the receiver and sure enough, there were the telltale beeps of a message. I listened. Your voice came on: flat, emotionless. I expected the best. I didn’t get it. The floor caved in.

My husband entered to the sounds of my sobbing, and I had to tell him the news. Do you know how that feels, Bob? To see his face and his reaction over the baby you’d wanted so badly? This was our lives, not some sterile clinic appointment with a stethoscope and typed notes.

We were left hanging, desperate for information on ways to help our daughter. When we finally got an appointment, you told us you’d recently had to give other parents “far worse news” than you’d had to give us. I’m sure that’s true. I’m sure they were devastated. We were lucky to dodge the bullet of a terminal diagnosis. It’s all relative, I know. But did you leave them voicemail messages?

Being told things could be worse really isn’t all that comforting. It still hurt. We still felt as if we’d lost our daughter. We were on a flight to Amsterdam and got diverted to Antarctica. We have better equipment now, but we are still in Antarctica. It is beautiful and lovely and challenging and inspiring here, and I wouldn’t change it for the world… but that wind does blow awfully cold sometimes. Do you know how that feels, Bob?

Seeing sick children every day must have hardened you to life, as it would anyone. You performed a grueling, honorable and important job for many years. But somewhere along the way you must have lost some of your heart. You became gruff, and brusque, and forgot that parents are fragile and vulnerable, as are their children, and need to be treated with care.

Genetic counseling followed several months later, but by then we’d done our own homework via Dr. Google. My enduring memory of that experience is being handed a list of deficits to digest, and slumping over in the car alone afterwards trying to muster up the energy to go back to work when I really just wanted to curl into a ball and stay that way.

We dumped you as our doctor. We never said anything to your face. We should’ve lodged a formal complaint so it wouldn’t happen to other parents. But we were feeling shocked, and tired, and frightened. Not any more. Perhaps your club on our heads toughened us up a little. But not like you, Bob. I hope not like you.

Don’t shoot the messenger, right? Well, maybe the pain would’ve been the same no matter what. But I’ll never know.

For future reference, and hopefully for the benefit of others as well, here’s how I would’ve liked to have been told:

1. A request for an appointment with us to discuss the blood test (within the next day or two).

2. In person, gently break the news that our daughter tested positive for Williams syndrome and is missing 26 genes from her seventh chromosome. Pass us tissues. Explain softly that there is no cure or magical fix, but through this early diagnosis there are plenty of clear-cut ways we can help her and make her life full, rich and joyous. Tell us Williams syndrome brings challenges but also plenty of upsides: she will win people over with her social personality and probably have an incredible memory and a strong ear for languages and music. Assure us that her beautiful smile and enthusiasm will light up our lives.

3. Pass us the names of people and organizations, both local and international, to help and support us. Remind us we are not alone — that actually many children in the world have genetic conditions and they make the world a richer, kinder, more diverse and rewarding place to be.

Bob, as Sylvia Plath once said at the end of a fiery poem: I’m through. I surrender my anger to the sky and wish you all the best in your future endeavors. But don’t call me again.

*Not your real name

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Williams Syndrome

Girl wearing blue hoodie with black stars

To the Future Educators of My Child With Williams Syndrome

Dear Educators, We’re about to deliver something precious to you, and without your support, it won’t make it. We are entrusting our sweet little girl, Allie, to you, but that’s not what I’m talking about. When we drop her off to you, we’re delivering our hope. Please take good care of it. We hope she will [...]
A meme that says, "13 Truths People Affected by Williams Syndrome Wish Others Understood."

13 Truths People Affected by Williams Syndrome Wish Others Understood

Approximately one in every 10,000 people worldwide lives with Williams syndrome, according to the Williams Syndrome Association. The rare genetic condition is characterized by learning difficulties and developmental delays as well as medical complications like cardiovascular disease. But people with the condition also tend to be highly social, kindhearted and have affinities for language and music. The Mighty wanted [...]

4 Helpful Things People Did After My Daughter Was First Diagnosed

A good friend asked me to think back to the first days after my daughter Emmy’s diagnosis and write about what was helpful when others reached out. As a friend, it can be difficult to be on the outside looking in as this new normal unfolds for someone else. For me, it’s hard to give [...]

She’s 26, Lives With Williams Syndrome and Has Her Own Successful Business

Jenny Lynn Unrein is an artist and an entrepreneur. At only 26, she has a successful business selling paintings, greeting cards, mugs, jewelry and more all over the world. Its an already fantastic feat made more impressive by the fact that Unrein has Williams syndrome, a genetic condition characterized by developmental delays and learning disabilities. Together with her stepmom, [...]