Friday, February 17, 2012

Antiphospholipid antibody syndrome, Antithrombin III deficiency, HELLPS & Preeclampsia!

My case study has been published in the American Journal of Hematology. 
(I have posted it at the very bottom of this post.)

I am here for you if you are looking for support or just a story to read. I went on a 9 year 6 pregnancy journey and have 2 Beautiful living children. My journey was filled with pain and sorrow but ended with overwhelming joy! 

Whatever your complications are, just know that you are not alone! This knowledge gave me the power to endure! I would have given up before I had my two children if it weren't for reading stories about other women's losses, strength and successes!

Our story . . .
I got a blood clot during my first pregnancy, suffered our first loss at 16 weeks. I ended up with another blood clot post loss. I saw a hematologist who ran tests and diagnosed me with Antiphospholipid Antibody Syndrome and Antithrombine III deficiency. He didn't recommend a future pregnancy because of the extreme health risk it would place on my life. I was 27 years old and wasn't ready to give up that easy. I saw a high risk OB who designed a plan for me to use the blood thinner lovenox and a baby aspirin everyday day after I had a confirmed pregnancy. This approach got us to 21 weeks at which time I developed HELLPS and the only option was delivery. We had to say goodbye to our little Ashley who didn't survive the birth. Our next loss was a typical 8 week miscarriage. (No loss feels typical, I was as deeply saddened as I was for the babies I did get to see and hold). At this point over 4 more Dr.'s had told us to give up hope on having children and to consider adoption. I finally was referred to Dr. Jody Kujovich, a Hematologist at OHSU. She began me on Lovenox and a baby aspirin prior to conception and we were overwhelmed with joy when we welcomed our baby girl Madelyn into this world. She spent 11 days in the NICU learning how to eat but she is a healthy fun loving girl through and through! My husband and I both wanted two children, he left the decision of whether to try again up to me. We new it was a HUGE health risk for me to be pregnant. We tried the same approach under Dr. Kujovich's care and this time it wasn't enough. Our precious little Wyatt was born just over a pound and lived a short blessed life of 45 days in the NICU. My Antithrombine III levels were just too low to allow the lovenox to work. 

We trusted in God to give it one final try and Dr. Kujovich designed a plan to give me Thrombate Infusions if my Antithrombine III levels were too low before the 12th week. They were indeed too low and I started 3 x's a week infusions at 13 weeks through 35 weeks. I gave birth to our healthy baby boy, Michael Jr.! I got to be awake during the c-section for the first time, we were together and able to bring our baby back to the room with us! WOW! NEVER GIVE UP!!!

16 wk miscarriage (& post D&C)
21 wk HELLPS - induced, natural delivery - baby Ashley didn't survive
8 wk miscarriage (D&C)
35 1/2 wk HELLPS (emergency c-section) - Living Baby Girl Madelyn, 4 lbs 11 oz (NICU 11 days)
26 1/2 wk HELLPS - c-section - Wyatt (475 grams - just over 1 lb) lived 45 days in the NICU 
35 1/2 wk c-section - Living Baby Boy Michael Jr. 5 lbs 6 oz

The first time I had HELLPS it was the typical throbbing pain in the upper right abdomen. I lived with this pain for 5 days before feeling like I was going to die. I recommend calling Labor & Delivery right away. I didn't want anything to be wrong with the baby. I know now that I could have ended up with long term damage if I had waited any longer.

My 4th & 5th pregnancies produced pain in my back along my bra line and a little in my right shoulder. Doctors were very confused by this location of pain but after reading many stories on the Pre-eclampsia website I have found it to be quite normal. This would always come on late in pregnancy causing me to go into the hospital earlier than expected. I had elevated blood pressure & the blood tests would show elevated liver enzymes and low platelet count which is HELLPS.

You all have a story and I hope that mine has offered some inspiration and hope if you are suffering. You and your  baby are in God's hands and things will work out for the best according to his plan. May God Bless you and your journey!

 Comment below or send me a note at

Madelyn born on June 29th
In loving memory of Wyatt

Michael Jr born on Aug. 27th
God Bless!


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