Loss, Survival, and Hope

Post On Tuesday, March 04, 2014 By Marilyn

Loss, Survival, and Hope

In Spring of 2012, I was pregnant for the first time and with twins! My husband and I were happily planning for the arrival of 2 little girls, due in August. Then at 21 weeks, my feet began to swell at the end of the day. At my visit to the OB/GYN that week, I questioned the swelling as well as the 125/80 BP I had. My baseline BP had been 105/60. I was told it was within normal range, and the swelling was also dismissed as non-concerning. On Easter Sunday, 22.5 weeks, I could no longer fit comfortably in my shoes, and my BP on a home monitoring machine was 135/85. I knew I had an appointment in a few days with Maternal Fetal Medicine, and convinced myself I would be told all was ok. But it wasn't. At the appointment my BP was 145/95 and when they checked my urine it was +2. I was immediately put in a wheelchair and taken to the perinatal unit and admitted with a diagnosis of preeclampsia..at 23 weeks. The admission on complete bed rest did not last long. Three days later, I developed severe belly and back pain. At first it was thought to be heartburn or my gall bladder. But an ultrasound and more blood work diagnosed HELLP syndrome, something I had never heard of. I was told my liver was swelling and platelets were dropping and I had to have an immediate C-section to save my life.

So at 23 weeks, 3 days, my daughters were born, neither weighing even a pound.

Unfortunately, the nightmare did not end there. I spent 3 days in ICU on magnesium to prevent seizures as my blood pressure remained high. My daughter, Elissa, passed away 5 days after birth.

I developed a blood clot in my leg and was later diagnosed with antiphospholipid syndrome, a sticky blood autoimmune condition. I also developed acute tachycardia. And all the time, my other daughter fought for her life. However, after 9½ months between 2 hospitals, we brought Alexandra home for the first time. She is trached, vented and g-tube fed but is slowly making steady progress. I look forward to the day she is decannulated. My family and I live in fear of germs, worried that Alexandra will get sick and delay her progress. Some family members have never even met her yet, and that breaks my heart. As for me, I need medication daily and blood tests monthly to check my clotting levels for the rest of my life. I know that I am at a higher risk for cardiovascular disease. Life will never be the same as I knew it, but every day when I look at my daughter, I know it was all worth it.

While home recovering in May of 2012, my mom read about the Lehigh Valley Promise Walk held in Forks Township, PA. She contacted Dawn, who was an extremely welcoming and understanding representative for the Foundation. For the first time we did not feel so alone with all that had happened.

I have learned a lot from my experience. I have learned that preeclampsia is more common than I had thought and that it can happen very early in the pregnancy. I learned that if something doesn't feel right, you need to push for answers. I learned that people, even medical professionals, need to be more aware and more educated about this condition, especially HELLP syndrome. I am glad to be a part of the Promise Walk. I want to help educate others about the dangers of preeclampsia and HELLP. I wish I had known then what I know now. Perhaps that would have made a world of difference.

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