photo credit DnMA Photograhy
It was January 1999, and I was 13 weeks pregnant hooked to an IV in the Emergency Room. Since violently vomiting Thanksgiving dinner, I had barely kept anything down. The ER doctors looked at my blood work, and I have never seen a team move so fast.
This was my introduction to medical professionals that understood how sick I really was with Hyperemesis Gravidarum (HG). My own obgyn’s staff had neglected me, “Your lips are really chapped,” as I peeled layers off my lips at the initial visit. “You should get a good Chapstick.”
Call after call in the weeks after that Chapstick visit went the same way.
”I can’t keep anything down. This isn’t right. This can’t be normal.”
“Everybody gets sick, dear.”
This Is Not Normal
After two months, a friend finally verified “this” wasn’t normal, not everyone was as sick as I was, that I should go to the ER.
So I called the doctor’s office, still the dutiful patient following the rules, saying I needed to go to the hospital.
“Have you held anything down the last 24 hours.”
“Yes, I just had a Popsicle, but I’ve only had two apples and some orange juice the last four days.”
“Call back when you haven’t kept anything down for 24 hours.”
“I’ll talk to you in 24 hours and 1 minute,” I said.
Turns out that I was neglected so long–from Thanksgiving to mid-January–that my kidneys were compromised. I’ve seen a lot of ER teams since that first visit, as one does with three HG pregnancies, and not one team has been as urgent or intense. Hindsight and knowledge clarify just how bad it was for me and my son and how lucky I am to be here, to be okay, and to have him.
The HG Care App would have documented my symptoms and communicated with my provider. It would have never gotten to that panicked ER.
HG is MORE than you SEE
That day, I learned two things: First, I had something called Hyperemesis Gravidarum (HG). Second, I would never again, ever, wait for permission to go to the hospital and seek care for myself and my child. EVER. I had to be my own advocate. I got through the rest of the pregnancy with home health care and the innocent thought that it would end and I was just having bad luck.
My oldest son was born in July 1999, exactly a month after HER’s Executive Director delivered her first child. But there was no HER then. I was alone. No one I knew had HG. No one had ever heard of it. NEVER again would I suffer as I had. No more kids. He was an only. No way no how. Nope.
Fast forward to 2004 and a (surprise) HG pregnancy. This one far worse far earlier. My son called my pregnancy, “The Sick.” The doctor couldn’t stabilize me, and I now recognize that I had symptoms of severe thiamin deficiency along with the HG. I didn’t want to die for this unknown child and leave my 5 year old behind. I chose him, and I wanted her gone. I decided to terminate. I was the worst mother ever. Then I got my wish. She died. I miscarried the child I would name Hope, the one I wanted gone left me.
The grief was beyond any pain I had experienced or have known since. The guilt without comparison…I was so sick–neurologically compromised and hallucinating at one point–that I truly hated my child, didn’t want her. HG put me in a battle for survival with my own baby, and the pain of my “win” was more than I could handle.
Finding HER
Months into my grief, still alone, still vomiting, I went to the new thing that supposedly had everything–the Internet–and searched for Hyperemesis Gravidarum. I found the HER Foundation.
I emailed Kimber MacGibbon, Co-founder and Executive Director, whose son is my oldest son’s age. Her gentle voice and knowledgeable, kind words helped begin my journey back to the living. I met HG moms in the support forums who loved me, loved my children (both living and lost), and let me talk endlessly about grief and sickness and guilt and pain. They understood and many had similar stories of medical neglect and grief.
When I lost Hope, I found HER and the hope of a community and Foundation that understood and cared. I’ve learned so much in 15 years. I’ve made so many friends. I’ve volunteered so many hours for HER.
And I learned how to get my rainbow HG baby home. In 2005, the same date his big sister was due, my younger son came home.
HER has touched every part of my life and my family, and I am forever grateful for the vision and hard work that brought this Foundation to 2019, to a place filled with research, treatment options, advocacy, and even an app. But most of all, I am grateful for a place where I found love when I was at the lowest, most painful point of my life. I am grateful for my HG sisters and the HER community.
Thank you, HER Foundation. I happily Come Home to HER, 15 years later, and every single day I can.
