I went many years without a diagnosis of indolent systemic mastocytosis (ISM) before being diagnosed in late 2000. This caused me to go through my childbearing years not knowing what was causing my symptoms.
One complication after another
I had two rough pregnancies in 1998 and 2000 at 29 and 31 years old, with one complication after another. Thankfully, I was under the care of a high-risk obstetrician because of my age.
With the birth of my son in 1998, I bled throughout the entire pregnancy. I was put on bed rest several times and ended up with a scheduled C-section. Though this didn’t seem that terrible, I knew something was wrong.
It was during the birth of my daughter in 2000 that things went wrong, and we both barely survived.
Surviving the birth of my daughter
On the day she was born, it was late April, and I was tired. My due date was June 25. I knew nothing about having ISM and the dangers of hot water, so I took a hot bath to relax, as I often did.
Suddenly, I got so tired that I could hardly lift my arms or move. I finally sat up, and that is when I noticed that my giant tub was filled with red water. I panicked and screamed for my husband, and when he stood me up, I was hemorrhaging. He called the neighbors to rush over, and they took my young son as my husband and I took off for the hospital.
We lived too far out in the country to call an ambulance, so we drove and called the hospital to let them know we were on the way. One of the last things I remember before I passed out was my husband speeding and switching the bright headlights on and off, as he didn’t know where the hazard lights were in my car..
At that moment, I could think only of my son and the baby in my stomach. I was convinced I was going to die. I didn’t have the strength to move or speak. I could only rest my head on the window and cry silent tears.
I don’t remember much of anything after passing out. I woke up once in a room under a heated blanket, with all kinds of tubes hooked up to me and lots of people working on me. The next time I woke up, I was told they had to perform an emergency C-section and hysterectomy on me to save both my life and the life of my daughter. I thank the good Lord for my obstetrician, Dr. Ziegler, being on call that night. He saved our lives.
My daughter’s fight for her life
I later found out I was in stage four hemorrhagic shock at 31 weeks. It was a preterminal event that caused me to lose 40 percent of my blood supply. I was given blood transfusions, but there was absolutely no pain. I was just so tired.
My sweet little girl weighed 3.9 lbs. and was transferred to a larger hospital where they had a better NICU. She would end up fighting for her life during her stay there for nine weeks. I was given a Polaroid picture of her while recovering in the hospital. But on day two, I had to leave and get to her.
I remember being in so much pain after the surgery, but all that mattered was seeing my sweet little girl. She was a fighter then, and she still is today!
The challenges of late diagnosis
Since I was not diagnosed until after the birth of my daughter, there is no way to know whether my pregnancy complications were due to ISM. My first pregnancies when I was younger were both normal with zero complications.
I had no idea that ISM could cause complications in pregnancies until I read an article about it recently. I have officially been diagnosed with this disease for 25 years, and I’m still learning new information because of the articles on SM companion and Rare Disease Advisor.
That’s why it’s so important to me to share my story–so we can all learn together about this disease and advocate for our health.
Learn more about SM signs and symptoms
The importance of advocacy and proper care
After the birth of my daughter, I ran into a nurse who was in the ER when I came in that night. She told me she had seen gunshot wounds and amputations, but she had never seen anyone lose that amount of blood. She told me she was amazed I lived through that ordeal.
I didn’t write this to scare anyone. I wrote this for anyone living with this disease who is pregnant or may want to become pregnant to help them understand that they need to be under the care of a doctor who has experience treating high-risk patients and is familiar with the disease or willing to learn about it.
We are all in this together, and I will never stop working to bring awareness to ISM and help others find the hope I have found for a brighter, healthier future.
