Afraid to Breathe: Samara’s Story

Afraid to Breathe: Samara’s Story

Samara McAuliffe gave birth to a daughter by what she thought was an uncomplicated C-section until she developed a pulmonary embolism eleven days later.

I gave birth by emergency C-section in 2006 to a son, and the surgery was life-saving for both of us.  My daughter was born by a routine C-section on Christmas Eve, 2009, because  I was not a candidate for a vaginal birth after a C-section, due to the circumstances surrounding my first emergency section.

I was a healthy, happy 29 year old mother of two after my daughter was born.  Eleven days after surgery, I was certain that I was beyond the time when any surgical complications could occur, but I was completely wrong.

I woke up early on January 5, 2010 with a sharp pain shooting through my left arm. I thought maybe I slept on it funny and turned over, but the pain didn’t subside. When I finally got out of bed about an hour later, I felt the same sharp pain radiating around my left pelvis. The pain progressed through the day to a point where I was unable to bend down and pick up my sweet daughter from her bouncy seat.  The best way I can describe the pain is to imagine a frozen kitchen knife stabbing my left lung every time I inhaled.  My breathing became so shallow by early evening that my husband suggested I go to the Emergency Room (ER).  I was so terrified, I agreed, and I called my mother to take us to the ER.  She was in favor of calling an ambulance, but I wanted to avoid the nearest hospital where an ambulance would take me, because I felt more secure going to another hospital, based on previous experience.

After a battery of tests in the Emergency Room, I was admitted for a pulmonary embolism (PE): blood clots-in my lungs-a diagnosis I could not believe!  I missed my children, but felt lucky to be alive. I was horrified, in pain, and sedated. I learned very quickly how to inject blood thinners directly into my stomach, although the injections caused massive bruising and pain. By the time I was discharged five days later, I was covered in bruises, exhausted, but gradually stopped being afraid to take a breath.  I had chest pain and pain at the injection sites, and I noticed that the low molecular weight heparin hurt more going into my tissue than the needle stick itself.  Something as innate to life as breathing was something I feared.

I went five days without seeing my children, and could not even pick them up once I got home.  I was depressed and discouraged, but healthy.  I didn’t have complications during my surgery, and had a prior C-section without complications, so I couldn’t help but wonder what on earth was going on?  How come this happening to me?  I was prescribed warfarin for 3-6 months, as well as anti-anxiety medication because I was convinced that I would drop dead while I was alone at home with my one month old baby.

The 3-6 months estimate for blood thinner therapy turned out to be optimistic. I went for the results of my blood panel, and found out I have Factor II Mutation-a clotting disorder that is also known as prothrombin 20210 mutation.  Prothrombin is a protein in the blood needed for blood to clot, and it is also called Factor II, and the mutation causes too much production of prothrombin which makes the blood more likely to clot.  I was told that I would be on lifelong blood thinners, and this was best practice due to the fact that I had a pulmonary embolism, coupled with my genetic clotting disorder.  Here I was at age 30, and was on blood thinners-medication I always thought was taken by an older age group.

I had no idea of the risks associated with a C-section. I’m sure I signed consent forms that stated the risks, but really the information did not penetrate.  I didn’t know much about the existence of blood problems other than anemia, for which I was being treated at the time of my surgery.  I thought there was more risk of bleeding rather than clotting with childbirth.  I didn’t do the research, so I couldn’t advocate for myself.  I now know that blood gets more coagulable (likely to clot) toward the end of pregnancy, and the C-section was a trigger that put me at higher risk, given my prothrombin 20210 mutation.

Now I think I know almost more than I want to about clotting disorders.  I know I will have to decide whether and when to test my children to see if they inherited the mutation.  I know my children have a 50/50 chance of having Factor II and I am proud I now have information to share with them, should either of them ever test positive for it.  I can share the risks of clotting related to pregnancy, if my daughter should choose to have children, so that preventive measures will protect her from a possible lifetime of blood thinners and blood work.  My sister has since tested positive for the mutation after my diagnosis, and has used this knowledge to take the proper precautions in her own life.  We know to stay active, avoid any estrogen, to alert all of our doctors about our clotting disorder, and to ask for preventive anticoagulation whenever we need surgery, are hospitalized, or encounter other risk.

My PE may have been avoidable. I am happy to be alive, although it is hard to understand why I survived and other women who had a pregnancy related PE did not. I feel a great deal of survivor guilt, but am learning to live my life again, two years after the PE.  I have a whole new normal, and am trying to embrace it as best I can.  I just hope that my story can help other young women learn that we are our best advocates, and we need to take care of ourselves and do the research required to know the risks associated with surgery, even for something as seeming routine as a planned C-section.

Take Home Messages

  • Childbirth and surgery pose risk for blood clots, and the presence of a blood clotting disorder may increase risk.
  • The patient describes what happens to the blood to increase likelihood of clotting with prothrombin 20210 or Factor II genetic clotting disorder.
  • The patient’s PE motivated her to make others aware of risk associated with surgery and pregnancy, so that other women are informed and can advocate for preventive measures.
  • It is wiser to call an ambulance to go to the ER, especially with symptoms of chest pain and shortness of breath, in case symptoms worsen enroute.  This patient wanted to avoid the nearest hospital, but it is better to transfer to another hospital after the symptoms stabilize.
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