Rare Diseases Day: Factor V Leiden Mutation - Keri's Story

   

My name is Keri. I am a Mom, a Wife and a survivor.

On this day to bring awareness of Rare Disorders, I am sharing my rare disorder story in hopes of bringing light to the world of Factor V Leiden Mutation.

In June of 2004, I was happily married and we were expecting our first child together in July. Throughout the pregnancy there were no indications that anything was wrong and things were going along smoothly. We had our everything in our nursery, diapers stocked and we were waiting for our precious child to be born sometime within the next month. Every night we would play with our son, telling him stories and watching his foot push up on my belly. We would tickle his foot and watch him move! It was an amazing connection that we had with our son, and he wasn’t even born yet!

Everything changed in an instant. I remember waking up in the middle of the night thinking I was having Braxton Hicks contractions. I was only slightly in pain and there was no regularity with it so I decided to go back to sleep and see how I felt in the morning. I will never forget feeling my son pushing his foot against my belly, as if he was trying to tell me something. I had no idea that it would be the last time I would feel that.

The next morning, I still did not feel quite right with dull pain that continued. I went to work as usual and was going to call and make an appointment to see my doctor from work. When I started to sweat and have chills, I knew something was wrong. I drove myself to the doctor and met my husband there. We sat in the waiting room and at this point I realized that I had not felt my baby move since that night. Panic started to kick in and as we walked down the hallway to the room. I started to sweat and get chills and had to run into the bathroom to throw up. As I curled up on the bathroom floor, I started to cry. Something was seriously wrong. I was able to get into a room and when undressed I saw the blood and went into shock.

I will never forget the nurse coming in and checking my belly with the ultrasound machine and she didn’t say anything. She walked out and came back in with the doctor and said she was having a hard time finding a heartbeat. After what seemed to be an eternity, the doctor said those words that you never want to hear, “I’m sorry…..”

From that moment, things went blurry and everything seemed to not make any sense to me. I was devastated and could not believe what was happening. They moved me to another room and asked if I wanted to have a C-Section or try to give birth. I honestly did not want to do either but I said to try birth. So, after hours of pain and anguish, they came in and said that I would need an emergency C-Section. Within minutes, I was rolled into the OR and was counting backwards until I was asleep. The next thing I remember was a nurse saying my name. I was still very groggy and remember being moved to another table and being rolled into an elevator.

I was hooked up to a bunch of machines and I remember being told that I had lost a lot of blood and was in the ICU. I had no idea how bad it really was at this point. My husband was by my side holding my hand crying and my Mom was in front of me with a worried look on her face. I was told that they almost lost me and that my baby boy was gone. I couldn’t cry, I couldn’t move, I couldn’t do anything but fight to stay alive.

The nurses came in and let me hold our son. He was lifeless and so tiny. We named him Jonah Kegan and had to start planning his funeral. At this point, we still did not know what happened to cause this devastation. We were focused on getting me healthy again and getting out of the ICU. After a week, I was finally able to go home. Most people are happy to go home after being in a hospital, but I was not. I knew that I was going home to have a funeral for my baby boy who never got to see the light of day. His white casket was so tiny it just did not seem real.

Time went on and I continued to heal. We were called into the doctor’s office and were told exactly what happened to me. My Placenta had abrupted due to over clotting. I was then told that I had a rare blood disorder called Factor V Leiden Mutation which not only caused my son to be stillborn, it also caused me to go into DIC which almost took my own life!

We could not believe what we were being told. I had a disorder that had I been diagnosed with it earlier, I would have avoided all of that! After much research on the subject, here are the things that I learned:

  • Factor V is a clotting disorder that causes blood to “over” clot or clot when it does not need to.
  • Factor V can cause clots in the leg and a pulmonary embolism
  • Factor V is genetic and is passed on by one or both parents.
  • A history of miscarriages is a sign of Factor V. My Mom had miscarriages and so did my Grandmother.
  • Factor V can be managed with blood thinners

After what I went through, my cousin decided to go get tested because she had 5 miscarriages and tested positive. My tragedy has helped her to understand why it happened to her and can prevent that from happening again with the right care.

Speaking of it happening again, my husband and I decided that we would try again to have another baby. I was terrified the entire time that the same thing was going to happen all over again. I was monitored very closely during the entire pregnancy and had to give myself blood thinner shots twice a day. My son, Kegan Daniel was born by C-Section on 4/17/06 without any problems! He is a healthy and happy child!

My story is not meant to make anyone sad or feel bad for me. I have had time to heal and now feel that my story could possibly help someone that has either been through something similar or could possibly have this disorder and not know it.

Here are some great informational resources:

If anyone wants to share their story with me, you can send me a message at keri@couponkeri.com. Also, feel free to visit my website at www.couponkeri.com.