Hillary Savoie

Hillary Savoie is a writer, rare disease advocate, and mixer of oddball cocktails. Mother to Esmé, the rarest of the rare.

PTSD Helps Parents Keep Their Medically Fragile Children Alive — But At What Cost?

“One of the big things that still gets me is that I had to do chest compressions on my own child.” Meghan Shuttleworth’s voice is surprisingly steady as she says this to me. She continues, “I have to do CPR training for work, which I just did a few…
By Hillary Savoie

"Esmé Would Stop Breathing, And I Was Calm"

Sometimes I wonder a bit if the PTSD actually originally stemmed from my daughter’s birth, from the whiplash of those few moments of holding her before everything spiraled out of control, from having to discharge myself six hours after her birth,…
By Hillary Savoie

"We Don't Want To Talk About What's Uncomfortable, So We're Left Feeling Alone."

For families with medically complex children, each day is a story of survival. Parents' lives are entwined with the medical system that keeps their children alive, and yet go unrecognized by that system when it comes to identifying and treating the…
By Hillary Savoie

"A Lot Can Happen In 10 Minutes When You Have A Medically Fragile Child"

For families with medically complex children, each day is a story of survival. Parents' lives are entwined with the medical system that keeps their children alive, and yet go unrecognized by that system when it comes to identifying and treating the…
By Hillary Savoie

"I Had To Do Chest Compressions On My Own Child"

For families with medically complex children, each day is a story of survival. Parents' lives are entwined with the medical system that keeps their children alive, and yet go unrecognized by that system when it comes to identifying and treating the…
By Hillary Savoie

"I Have Flashbacks Of Her Turning Purple"

For families with medically complex children, each day is a story of survival. Parents' lives are entwined with the medical system that keeps their children alive, and yet go unrecognized by that system when it comes to identifying and treating the…
By Hillary Savoie

"During Seizures, You Cannot Do Anything For Them"

For families with medically complex children, each day is a story of survival. Parents' lives are entwined with the medical system that keeps their children alive, and yet go unrecognized by that system when it comes to identifying and treating the…
By Hillary Savoie

These Dancers Shook Up All Our Ideas About What Kids With Special Needs Have To Offer

In Studio One at the National Dance Institute (NDI) in Harlem, New York, it is the dancers' first day together. They are still nervously getting to know each other when the piano kicks in with a cheerful take on "You're The One That I Want."…
By Hillary Savoie

Before You Ban Screen Time For Your Kid, Consider Mine

Screen time catches a lot of flak. At this point it seems like everywhere you turn you can find screens mentioned somewhere in every list explaining of why “kids today” are whatever they are. Psychology Today warns of "lifetime consequences" for…
By Hillary Savoie

Can Big Bird Help Our Kids Recover From Trauma?

I have witnessed first-hand Sesame Street’s ability to heal a child’s soul: Last fall, my daughter Esmé visited the Sesame Street set and struck up friendships with several of the Muppets there. Months later, those interactions with her “Sesame…
By Hillary Savoie

Are We Ready To Talk Honestly About Disability, Pro-Choice Politics, & That Abortion Ban?

When I saw the email asking me to write about the recent Ohio law that makes performing an abortion after the prenatal diagnosis of Down syndrome a felony, signed last week by Governor Kasich, I winced. While I have a lot to say about disability and…
By Hillary Savoie

If You’re Expecting, You Should Know The Symptoms Of HELLP Syndrome

Kristin Hinton, in the hospital laboring with her first child, when her doctor overheard Hinton mention a pain in her shoulder and neck, and asked about it. Hinton told the doctor about that pain, as well as pain she had in her right ribs over the…
By Hillary Savoie

Why I Threw Out My Daughter's Developmental Testing Reports

Given my 6-year-old daughter Esmé’s disabilities, developmental testing — the process of assessing a assessing a child's developmental skills using standardized testing methods — is very much a part of our lives. These tests are a requirement for my…
By Hillary Savoie

Don't Know Any Young Moms With Special Needs Kids? They Probably Unfriended You

Amanda Smith’s voice halts periodically as she talks about her 9-month-old son Oscar. After a totally uneventful pregnancy, Oscar was born with a rare genetic mutation neither Smith nor her husband carry. He spent the first two months of his life in…
By Hillary Savoie

Donald Trump Wants "Better" Health Care — But Not For My Child

This morning, I diligently made my morning calls to the moderate Republican Senators who are wavering on voting for the Senate’s version of the healthcare reform bill, the Better Care Reconciliation Act (BCRA). The BCRA is the Senate counterpart to…
By Hillary Savoie

You Don't Care About My Daughter's Life If You Voted For AHCA

My 6-year-old daughter Esmé is medically fragile, which means she has special health care needs. While she doesn’t have a clear diagnosis, we know that she has four separate genetic mutations that cause a suite of symptoms, including seizures,…
By Hillary Savoie

Why Talking About Stillbirth Is So Necessary In 2017

Before the summer of 2015, I understood that stillbirth — or the death about a baby during pregnancy after 20 weeks gestation — was something that happened. However, based on the number of times I’d ever heard anyone so much as use the word…
By Hillary Savoie

An Open Letter To My Congressman About Trumpcare

Dear Congressman Faso, I call your office pretty regularly these days. I’ve requested meetings with you on the Congressman John Faso website and through your scheduler directly, but no luck yet. I also would have attended a proper town hall meeting,…
By Hillary Savoie

I Long To Hear My 6-Year-Old Daughter's Voice

There are so many things that are different about my daughter Esmé — most, but probably not all, stem from her four separate genetic mutations. There are the scary differences — the seizures that started in infancy, the breath-holding spells, the…
By Hillary Savoie

Special-Needs Parents Share Why DeVos Scares Them

The confirmation of Betsy DeVos as Secretary of Education, arguably the most controversial confirmation process in a series of contentious confirmations, is not likely to be forgotten by anyone any time soon. DeVos was barely confirmed by the senate…
By Hillary Savoie