I Had My First PE at 16: Cassie’s Story

I Had My First PE at 16: Cassie’s Story

Cassie Sheffield and her birth family were affected by blood clots, and discovered that the family has a genetic blood clotting disorder, Antithrombin (AT) III deficiency, that carries a high risk for blood clots.  Cassie not only developed multiple pulmonary emboli in her teenage years, she learned that her mother and two brothers had AT deficiency, and her baby son Noah was born with blood clots. Despite illness and tragic loss, Cassie sees herself as a survivor with perspective on life.

I had my first hospitalization with multiple pulmonary emboli (PEs) in both lungs when I was 16.  I was taking birth control pills, and my mother had deep vein thrombosis (DVTs) with all of her 3 pregnancies. My left leg hurt terribly the day I was discharged, but ultrasounds were negative for DVTs, and the doctor assumed that my leg hurt because I hadn’t been on it for 2 weeks.

I was taken to my local ER the next day, because my leg pain was much worse, and at that point, an ultrasound found several DVTs in my leg.  I was rushed to a larger hospital, and sent for a clot busting procedure which didn’t work.  I then had an inferior vena cava (IVC) filter placed to prevent any more clots from going to my lungs.

I was free of blood clots until my pregnancy five years later.  I was put on Coumadin® and was told I’d be on it for life.  My mother and I were tested for a clotting disorder at the beginning of my pregnancy. I had not been tested previously, because my DVTs and PEs were attributed to hormone-based birth control, and my mother’s history was not considered relevant when I first started birth control pills.  We were both diagnosed with Anti-Thrombin III (AT III) deficiency.

I was placed on low molecular weight heparin during my pregnancy, since Coumadin® is risky in early pregnancy, and was monitored by my regular doctor, a hematologist, and a high risk pregnancy specialist.  During my eighth month of pregnancy, I had one night when I slept like a baby.  My baby was not as active as usual, so did not keep me awake. However, I sensed something was very wrong.

I went in for an ultrasound, and everything checked out 10 of 10. They performed a second ultrasound to be sure, and I was told that everything was fine, and that my baby was moving less because he was positioned lower in the birth canal.

I was put on the fetal stress monitor at my regular appointment with my obstetrician that same day.  It showed my baby was in distress, and I was sent for an emergency C-section.

My baby, Noah, wasn’t breathing at first, but was quickly resuscitated.  He was brought to me for the first time before being transported to the neo-natal intensive care unit (NICU).  He was beautiful, and weighed 7 lbs.

I was discharged a few days later, and went straight to the NICU to be with my baby.  His main complication was fluid on his brain, and we decided that he would have a shunt put in place if needed.  I had leg pain once again, as well as reddish discoloration a week after his birth.  I knew it was another clot, but I hated the thought of being separated from Noah again.

I finally told my doctor about my leg symptoms.  Because of my complicated history, the hospital where my baby was wouldn’t admit me.  When our son, Noah, was 2 weeks old on Sept. 27, 2007 my husband, my boss, and I went into the NICU to see him.  The doctor thought Noah had a blood clot, because his leg had turned blue.

My 2 week old darling Noah had a blood clot!!! The doctors asked us to have my blood clot history faxed from my hematologist and bring it to them.  While I was waiting for the fax, my phone rang……… It was the call I had feared for 2 weeks.  The voice on the phone told me my baby was dying, and I needed to come back now.  I lost it.  I don’t even remember going back to the hospital.

My baby was surrounded by nurses and doctors when we got to the NICU. The doctor asked the nurse to give my baby boy to me.  Even before I could hold Noah, I saw his heart monitor go from 40 to 28 to 0.  He was gone.  My baby was gone.  I lost every bit of self-control.  I screamed and cried, and asked God to take me instead.  My baby was wrapped in a blanket and given to me in a private room, where my husband, family, and I held and kissed Noah goodbye.  That was the last time I held my baby boy.

We had a small, intimate, graveside service 2 days later that was packed with so many family and friends, who never had the opportunity to know our beautiful baby boy with whom we fell deeply in love during my 8 months of pregnancy and his 2 weeks of life.  I was 20 years old, my son had died, and I was told I couldn’t work anymore, because of my clotting history.  I made it through this terribly tough time in my life through prayer and emotional healing.

I’ve been advised to avoid any future pregnancies, and I plan to follow that advice.  I know there is an associated clotting and health risk, but, mainly, I am too scared.  I’m now 23 without a job, and on disability.  I can only use an intra-uterine device (IUD) to prevent pregnancy.  A hysterectomy is too risky because there is risk in having any surgery.  Somehow I, my husband, and family accepted all this loss and change in our dreams.  One day we hope to be blessed with a child through adoption.

The story isn’t over….. My 2 older brothers didn’t want to be tested for AT III deficiency, because they were clot free.  In 2009, the younger one, who was 25 at the time, was honeymooning in Hawaii, from where he called me to say his calf was swollen and hurting.
I told him to take aspirin until he came home.  When he got home a few days later, he was diagnosed with a DVT.

His DVT began moving and he was rushed into surgery to have an IVC filter placed.  He stayed on Coumadin® for 6 months.  This convinced my oldest brother to be tested, and he has AT III deficiency as well.  My mother is 1 of 10 children in her family, and none of the others, all older, had a blood clot.  Nevertheless, all 3 of her children have AT III deficiency, two of whom clotted, and my son may or may not have been AT III deficient, but died from a blood clot.

My brother who had a DVT was placed back on Coumadin® after he had severe pain in his abdomen.  He did not clot again, but was told that his blood is extremely thick.  Both of my brothers have children, and we can only hope and pray that these cherished children do not have AT III deficiency.

Our lives have all been changed forever because of blood clots. Even if we woke up in the morning and the clots and AT deficiency were miraculously cured, it wouldn’t change all that happened.  We are survivors, although our little baby wasn’t strong enough to overcome his clot.

My brother with the DVT has a new baby, and he named his son after Noah.
Our son was Noah Caiden Brown and my nephew is Chance Caiden Sheffield.  Our family is blessed, despite the mental and physical pain we’ve lived through.  The blood clots can never erase the happiness, good times, good memories, or most importantly, those precious 2 weeks we shared with Noah.


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