Pre-e with Hellp Syndrome 22 weeks 1 day

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

Pre-e with Hellp Syndrome 22 weeks 1 day

Postby Kayleighsmom » Tue Mar 19, 2013 06:06 pm

Everything was going smooth until I reached 13 weeks gestation. I developed gestational diabetes early with this pregnancy. I noticed it had become increasingly difficult to control blood glucose. I was started on insulin; both regular and long acting. This didn't happen before. I was starving, but yet my sugar levels were out of control. The once daily injections soon turned into 3x's daily.

I went in for my second trimester blood draws. I was already considered high risk, but this didn't alarm me. I met with the specialist during my 2nd trimester u/s scan. A genetics counselor came into the room after I learned we were having a girl. I was so excited. Unfortunately, this didn't last long. My odds of DS increased from 1:1000 to 1:5 within several weeks. My world was crushed. The option of having an amniocentesis was brought up, and I had less than 30 minutes to make up my mind. I knew from a previous experience this was out of the question.

I began to search Google to find out what correlations could be drawn from high Beta HCG (3.25), and Inhibin A (8.45). It didn't look good. I was scheduled for a repeat scan a few weeks later. Baby girl looked great. No soft markers, or other concerns. My blood pressure was really high - 153/111. I was 21 weeks at this point. I had experienced nasty headaches that week, and terrible heartburn with nausea. My bp meds were changed, and I was sent home.

Three days had passed, and I noticed my ankles were swelling, and my vision was blurred. That Friday evening I looked at my husband and children as I thought about the inevitable. I drove myself to the hospital fully thinking I would be sent home for high anxiety. My blood pressure was still elevated, and I had an abnormal heart rhythm. I couldn't reach my family by phone, and couldn't drive home. I was sent to another hospital by ambulance. I was diagnosed with preeclampsia. When I reached the alternate hospital the condition rapidly worsened to HELLP syndrome. My only option was induction and delivery.

I labored for 12 hours. I received an epidural along with other IV pain medications. Nothing seemed to help. During the induction process I was told my daughter would not survive because I had not reached the age of fetal viability. I was given literature to read - all the while still feeling my daughter's movements. This was too hard. I didn't have anyone by my side. My husband couldn't stay because he needed to be with our other children. We don't have family to rely on either. I was so scared, and very sad.

My bag of waters broke around 10 pm. It was at this point I knew there was no turning back. I couldn't hold on to her anymore. It became very real. I no longer felt her movements. I delivered my precious Angel at midnight. She was sleeping. I was afraid to look at her, but I knew I had to. I gave Kayleigh the once over - I counted her fingers and toes. I looked at her face, and kissed her. I said my goodbyes, and took pictures. My husband was not with us. He didn't want to see her. I pulled every bit of strength I could to make sure I showed she was loved. I had her blessed.

After Kayleigh left my room the emptiness set in. I stayed in the hospital for a total of 4 days. I went home early because I couldn't bare the pain anymore.

I never thought my pregnancy would end this way.

I went to a follow up appointment to see my OB today, and was hit with another blow. It was advised we never try to conceive again, and out of my doctor's career I was his only patient to have Hellp Syndome. Before me he had only read about a case like mine in the text books. I am literally a text book case. I have NEVER felt so horrible. I could tell the staff was informed about me before my arrival. The receptionist's comment was my first clue. She said that I showed up.

I feel like an alien.

Sorry, the story is so long. I want to also share a brief history. I had pre-e with hellp syndrome with my first pregnancy. My son will be 15 this summer. I went on to have three more children - no pre-e. I married a few years ago and had a miscarriage last summer. We conceived last fall and I developed pre-e with hellp syndrome with this child - baby# 6.
Kayleighsmom
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Re: Pre-e with Hellp Syndrome 22 weeks 1 day

Postby kerisue » Wed Mar 20, 2013 04:00 pm

I'm so, so sorry to hear about what happened to baby Kayleigh. Pre-e and Hellp are devastating, cruel diseases. Giving birth alone must have been particularly harrowing- I too was alone (well, my mother was there, but baby's father was not) and I knew there was little chance for her survival.

Like yours, my OB advised me never to have another pregnancy (according to her I could use a gestational surrogate, but who can afford that??). However, I later met with a maternal-fetal-medicine specialist (high risk pregnancy OB) who supported my desire to try and conceive again. Not sure where you are located or what your health insurance coverage would allow, but if you are able to consult with a specialist I would recommend that before giving up on your desire to have another child. Some people do decide not to put themselves (and potentially a child) through that again, others go on to have successful subsequent pregnancies.

Wish I could give you a hug. I'll light a candle for Kayleigh tonight.
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed
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