Leigh Johns' Fundraising Page
I am a two time survivor of HELLP syndrome and preeclampsia. My husband, Timothy Johns and I were married in 2013 and traveled to Cancun for two weeks for our honeymoon. Everything about that vacation was perfect, and when we got home we learned a few weeks later that I was pregnant.
Aside from profound fatigue (we're talkin naps after breakfast, at lunch time, before dinner, and asleep by 9pm), I had an easy pregnancy. I didn't gain weight, no sickness, nothing. I was extremely nervous throughout my pregnancy, but by the time I was 20 weeks we had a reveal party and learned that we were having a little boy, and my anxiety started to lessen.
At 22w2d my husband and I went out and bought all of his furniture. I had my breast pump...things were looking up! I went into work on a Monday morning, 22w4d pregnant and just felt a little "off" or gassy. I couldn't put my finger on it. The feeling didn't subside throughout the day and by the time I went home I just wanted to rest. By 9pm, the gassiness had turned into discomfort and a small amount of pain. My on-call OB suggested it was likely reflux and to take tums and call back if it got worse. At 10pm, my OB called me, and while I didn't think it was better, I didn't want to be the squeaky wheel. By 11:30pm, I could no longer lay, or sit, and since I had moved downstairs onto the couch to sleep, I was pacing my living room, realizing that something wasn't right, and starting to panic.
That night I was diagnosed with preeclampsia, with my blood pressure at 175/105 as I arrived at the ER. I was put on bed rest and mag sulfate immediately and my pain was getting unbearable. I learned more early the next morning. The MFM came into my room and said, "You have HELLP syndrome. You have to deliver your baby now. He may cry out, but he will die." Eventually I spoke with my OB who educated me and explained that women die from HELLP syndrome and if I didn't have my baby now, we would both die.
As I was induced, I continued on mag sulfate to try to prevent seizures and stroke, I developed pulmonary edema and started to have trouble breathing, and felt my heart break as I got to listen to my son's heartbeat one last time. What made it so much worse was knowing that I was sick and he was perfect. My husband conceded in the name debate and before he was born we named him Vincent Alexander. Vincent was born the day before my birthday and Thanksgiving on November 27, 2013 at 2:39pm weighing 11.2oz and was 10.5" long. We held him for almost four hours as we waited for his cord pulses to stop. I left the hospital 3 days later without my baby.
I was pregnant again before Vincent's due date. This time I was being followed closely by an amazing MFM and OB who took my concerns and my history very seriously. I had monthly growth scans and OB appointments, a relatively easy pregnancy, but started to develop some pretty significant SI join pain and had trouble walking. I had been on an aspirin regimen since before I tried to get pregnant and I hoped that if anything happened, we would learn quickly.
My blood pressure started to get a little wonky around 29 weeks. I had several visits to the ER for monitoring and couldn't decide if my BP was legitimately high or if it was just anxiety. My OB wanted to meet me at the hospital for my 34 week appointment, as she was busy delivering babies. My blood pressure when I arrived was 160/110. She told my husband to drive me straight to a neighboring hospital with a NICU for a 24 hour urine (my sixth of the pregnancy) and BP monitoring. "If you come back with protein or your BP doesn't come down, you're having this baby and you'll have a c-section." I was convinced my BP meds would be increased and off I'd go.
24 hours later my protein came back at just over the threshold of preeclampsia and my blood pressure never stabilized to a safe level. My MFM had stayed late to get my results, consulted with my OB, and at 8:10pm on November 11, 2014, my second son, Jackson Eli was born at 34 weeks, 5lbs11oz and 17" tall. He was taken away and to the NICU where he spent the first 22 days of his life. Once again, I had to leave the hospital without my baby.
My third and final high risk pregnancy ended at 37 weeks without preeclampsia or HELLP syndrome. Although my blood pressure was labile, I never developed the one illness that scared me and made me fear for my life and leaving my husband and son without a mother. My daughter Edith Anne was born at 6lbs6oz and 19" tall and I held her on my chest as I was wheeled out of the OR. Less than 48 hours after her birth, we left the hospital together.