Take Me Back To The Night We Met

(our story, and an ask)

This week was my 40th birthday, and if I’m being honest, it’s not one that I was particularly looking forward to. Not because of it being a milestone or anything like that related to getting older, but that it reminds me of how I felt this time last year. How my complaints were interpreted as “normal” for my condition—and how over the next seven days I would feel progressively worse.

My condition on September 7, 2021 was 22 weeks pregnant.

At 20 weeks we had just closed on and moved into our forever home in a neighborhood we love, and shared with friends and family via social media that we were expecting a baby girl—via a Cameo video message from Gloria Steinem, because yeah, I’m a bit extra. At 20 weeks we were feeling it was “safe” to share our exciting news.

Finding out we would be having a baby girl.

I had been experiencing lower extremity swelling and persistent headaches but was assured this was normal pregnancy stuff and that I was likely dehydrated—for the next three weeks I would guzzle water and Pedialyte (which pre-pregnancy I normally reserved for hangovers) in an attempt to remedy things and continued to stay in regular touch with my OB office.

It was September 11th that things really took a turn—a Saturday. I spent the early afternoon wandering the grounds of the Memorial Art Gallery for their Clothesline Festival, browsing potential artwork for our new home. We decided to cut things short as my feet continued to swell to sausage-like levels, ready to bust out of their casing. As I relaxed in bed, elevating my feet, extreme indigestion ensued. I would go on to spend those Saturday and Sunday nights tossing and turning, filled with little sleep and no relief.

The on-call doctor for the weekend suggested I be seen on Monday, an appointment I almost cancelled because I was so incredibly exhausted, assuming they could recommend a solution to my discomfort over the phone. But I went, the appointment almost entirely a blur, except for my blood pressure reading—180/110—followed by instructions to drive myself straight to the hospital—I believe I cracked a joke about a quick Target run, but nobody was laughing.

My husband, Bill, met me at Rochester General Hospital, where I was diagnosed with Preeclampsia and HELLP Syndrome. Preeclampsia was only something I knew of a few women having at the end of their pregnancy, and the later, I had no clue. It had been mentioned during my repeat conversations about not feeling well, followed by “but that only happens after 20 weeks, and it’s very rare to have it that early.”

Since it was during the COVID pandemic we all wore masks in the hospital, but I could see in Bill’s eyes that things were not good. My blood pressure continued to rise above 200 (systolic), and I was given magnesium sulfate to prevent seizures. I was transferred via ambulance to Strong Memorial Hospital, where they were best equipped to navigate my now high-risk situation. The 20-minute ride felt like an eternity, made worse as my ambulance was greeted by protestors—health care workers who refused to get the mandated COVID-19 vaccine.

I was brought up to unit 3-1400, High Risk Labor & Delivery.

About Preeclampsia and HELLP Syndrome (as defined by the Preeclampsia Foundation)

Preeclampsia is a life-threatening hypertensive disorder that occurs only during pregnancy and the postpartum period. Preeclampsia and related disorders like HELLP syndrome are most often characterized by a rapid rise in blood pressure that can lead to seizure, stroke, multiple organ failure, and even death of the mother and/or baby.

HELLP (Hemolysis, Elevated Liver enzymes and Low Platelets) syndrome is a life-threatening pregnancy complication usually considered to be a variant of preeclampsia. Both conditions usually occur during the later stages of pregnancy, or soon after childbirth (sadly not the case for me). Among pregnant women in the United States, 5 to 8% develop preeclampsia; 15% of these develop HELLP syndrome. My husband is right when he says “we ended up on the shitty end of a statistic.”

Currently, the only “cure” for preeclampsia is delivery of the baby and placenta.

Meeting Our Baby Girl (the abbreviated version)

After some very difficult conversations, including critical lab results for my failing liver and kidney function along with very low platelet count, we would have to deliver at only 23 weeks. I was induced, and delivered our daughter, born sleeping (stillborn) on Tuesday, September 14th, 2021. Leading up to this point, we hadn’t fully decided on a name, believing that we had 17 more weeks until we would meet her. The nurses took her away and brought her back wrapped in a purple knit blanket and cap, handing her to me. They asked if we had a name for her, Bill and I looked at each other and instantly knew, she would be Willa Sue—short for Susan, in memory of Bill’s mom. I remember handing Willa to Bill, and instinctively was careful to support her head, later feeling embarrassed that I did that like I was in denial of our reality. I’m grateful that my mother, very best friend, and father-in-law were able to be there and have a chance to also hold their granddaughter/niece, the hospital making a room capacity exception because of our loss.

After family left, the nurse took Willa away. I remember wishing I had taken a picture of her, but I was still in a state of shock.

A little while later the nurse returned with Willa, wearing a red floral dress. It seemed like a sad sort of kismet, red being my favorite color and the style dress something I personally would have worn. They had her on a CuddleCot, a kind of refrigerated baby bed that helps preserve the body of a deceased newborn. This was the first time I would cry. And again, I did not remember to take a picture.

After spending some time with Willa, it was time for us to say goodbye. The remainder of the night was spent in disbelief, with routine checks on my health from the doctors and nurses. I remember those as the loneliest hours of my life.

The next day, when it was finally time to go home, Nurse Jan brought a box into our room along with necessary discharge paperwork. It was a bereavement box. In addition to bereavement support information, this box contained photos they had taken of Willa in the red flowered dress in an envelope for us to look at when we were ready, a small ring and stuffed animal that were with her in those photos, her footprints, and the purple blanket she was wrapped in when we first held her.

We left the hospital with a box instead of a baby. As we walked through the lobby to the parking garage, I remember saying something about how you never know what someone else is going through, and that we should all be more kind to strangers and give more grace.

Over the next few days/weeks, I was in and out of the hospital and doctor’s offices, navigating my new health challenges and postpartum visits. When the time felt right, we returned to the bereavement box, on the dresser in what still is Willa’s room. We were able to revisit its contents, and view photos of our baby girl for the first time. The contents of this box mean the world to me. It’s all we have, and we feel fortunate that this is something that was provided to us.

I wear the ring on a Forever Bracelet—a solid gold chain that is welded around my wrist. I think of our sweet Willa Sue every single day, and what might have been.

On days when I’m particularly sad, I go to that box. And I don’t want there to be a day when loss parents are not given a bereavement box.

For my 40th birthday and Willa’s day, I am raising funds to support the Bereavement Box program at Strong Hospital for families. The boxes will be used on the labor and delivery floor for any mom who loses a child at any point in her pregnancy. If you’ve read this far and want to join us in supporting this initiative you can do so online here: rochester.edu/giving/belasco, the Willa Belasco Kalish Bereavement Fund.

If you wish to contribute instead via check, please make payable to University of Rochester, and in the memo write A13790-Willa Belasco Kalish Bereavement Fund, sending to the attention of: Dianne Moll, P.O. Box 278996, Rochester, NY 14627.

To all who have supported us over the last 12 months with food, flowers, kind words, conversation, and resources during our grief, we love and thank you for everything.

To the hospital staff whose bedside manner in the face of loss was nothing short of incredible, we appreciate and thank you for all that you do—Dr. Gilman, Dr. Coulter, Dr. Queenan; Nurses Katy, Woody, Margaret, Abby, Alissa, Jan, and Elise; as well as Dr. Weston at RGH. Apologies for any names I’m missing here.

To New York State Senator Jeremy Cooney, thank you for your work in helping pass Lian’s Law—increasing access to maternal health education for preeclampsia, and for sponsoring the bill that would include mothers of stillborn children to be eligible to receive Paid Family Leave.

Willa’s footprints, included in our Bereavement Box.

Thank you to Jennifer Johnson, Director of Family & Community Outreach at Golisano Children's Hospital for being such a special human, and connecting me with the incredible Liz Conrow, Bereavement Coordinator. Liz, we can’t thank you enough for all your support, bereavement resources, time, and energy in helping us to make Willa’s Day happen. I look forward to giving you a big hug.

To other loss parents, we see you.

In keeping with the music-theme of my very limited writing here, the title of this blog post is from a song by Lord Huron featuring Phoebe Bridgers. It’s my Willa song, and one I listen to often.

To our sweet Willa Sue, we love you and see you in the signs we receive. I’ll continue to look forward to seeing you in my dreams.