Pregnancy: PPCM Awareness

By contributing writer Leah Tomecek

July 9, 2009 my son Elijah was born.  July 9, 2009, while giving birth to my son, I was in congestive heart failure.  A bittersweet day for me- a brand new mommy.  This past July 9th as we celebrated Eli’s 2nd birthday we also celebrated my survival of a rare condition called Peripartum Cardiomyopathy.  My pregnancy was uneventful until about 7 months into my pregnancy when things started to go haywire. My feet and ankles started to swell.  One day I was laying in bed and my heart felt like it was going to beat out of my chest.  This beating sensation became more and more common the closer I came to my due date until I was constantly having palpitations.  Whenever I lay flat I felt like I was drowning.  My breathing started to sound like a fire crackling in my chest.  I eventually developed pregnancy related carpal tunnel syndrome.  Day after day I grew more concerned for my health and the health of my baby but after a few exams and the doctor assuring me this was a normal part of pregnancy I continued to get ready for my baby’s arrival.  After complaining so much that my heart ‘hurt’ my OB finally sent me to the ER on July 1.  The ER did an EKG and sent me home with the diagnosis of tachycardia. A week later I was back at the OB for my weekly visit and he decided to induce me because of the continuing problems with my heart palpitations, breathing, and swelling.  I was induced on July 8th around 11 AM and Elijah was born at 2:14 PM on July 9th.  Eli was born via C-section because my body was so distressed and I could not breath.  The first time I saw my newborn son was five hours after he was born in my room in the Intensive Care Unit.  I was not allowed to be in the maternity ward with him because I was in congestive heart failure.  The day I had dreamt about for 9 months never came, instead we were floors apart in the hospital, both alone. 

I was diagnosed with Peripartum Cardiomyopathy, a form of dilated cardiomyopathy defined as deterioration in heart function between the last two months of pregnancy up until five months post pregnancy. In PPCM the heart becomes weak (more specifically the left ventricle), does not work efficiently, and leads to congestive heart failure, arrhythmias, thromboembolic events, and even sudden cardiac death.   In the United Stated PPCM affects every 1 in 2,000-4,000 births.   It’s been two years.  While in the hospital the doctors found a severe leak in my mitral valve which has since been repaired.  I am happy to report I am considered fully recovered however I might be on medication the rest of my life.  For 8 months I read about pregnancy, I went to a birthing class, I talked to many mothers, and not once did I hear of PPCM.  None of the doctors even suggested something might be wrong with my heart, not because they are poor doctors, but because it is such a rare condition.  This condition has deeply affected me, but I am alive. Now I am a mommy to an awesome 2 year old boy.  I am also an advocate of PPCM awareness.  .  I survived, some have not.  I want to make sure there is a 100% survival rate of PPCM.

July 9, 2009 my son Elijah was born.  July 9, 2009, while giving birth to my son, I was in congestive heart failure.  A bittersweet day for me- a brand new mommy.  This past July 9th as we celebrated Eli’s 2nd birthday we also celebrated my survival of a rare condition called Peripartum Cardiomyopathy.  My pregnancy was uneventful until about 7 months into my pregnancy when things started to go haywire. My feet and ankles started to swell.  One day I was laying in bed and my heart felt like it was going to beat out of my chest.  This beating sensation became more and more common the closer I came to my due date until I was constantly having palpitations.  Whenever I lay flat I felt like I was drowning.  My breathing started to sound like a fire crackling in my chest.  I eventually developed pregnancy related carpal tunnel syndrome.  Day after day I grew more concerned for my health and the health of my baby but after a few exams and the doctor assuring me this was a normal part of pregnancy I continued to get ready for my baby’s arrival.  After complaining so much that my heart ‘hurt’ my OB finally sent me to the ER on July 1.  The ER did an EKG and sent me home with the diagnosis of tachycardia. A week later I was back at the OB for my weekly visit and he decided to induce me because of the continuing problems with my heart palpitations, breathing, and swelling.  I was induced on July 8th around 11 AM and Elijah was born at 2:14 PM on July 9th.  Eli was born via C-section because my body was so distressed and I could not breath.  The first time I saw my newborn son was five hours after he was born in my room in the Intensive Care Unit.  I was not allowed to be in the maternity ward with him because I was in congestive heart failure.  The day I had dreamt about for 9 months never came, instead we were floors apart in the hospital, both alone. 

I was diagnosed with Peripartum Cardiomyopathy, a form of dilated cardiomyopathy defined as deterioration in heart function between the last two months of pregnancy up until five months post pregnancy. In PPCM the heart becomes weak (more specifically the left ventricle), does not work efficiently, and leads to congestive heart failure, arrhythmias, thromboembolic events, and even sudden cardiac death.   In the United Stated PPCM affects every 1 in 2,000-4,000 births.   It’s been two years.  While in the hospital the doctors found a severe leak in my mitral valve which has since been repaired.  I am happy to report I am considered fully recovered however I might be on medication the rest of my life.  For 8 months I read about pregnancy, I went to a birthing class, I talked to many mothers, and not once did I hear of PPCM.  None of the doctors even suggested something might be wrong with my heart, not because they are poor doctors, but because it is such a rare condition.  This condition has deeply affected me, but I am alive. Now I am a mommy to an awesome 2 year old boy.  I am also an advocate of PPCM awareness.  .  I survived, some have not.  I want to make sure there is a 100% survival rate of PPCM.

Three websites for more information on PPCM

http://www.amothersheart.org/
http://www.ppcmdrfett.com/
http://www.peripartumcmnetwork.pitt.edu/study.html
There is more to life than fashion.  I wanted to take a minute to share with you my dear friend Leah’s story.  It is important for any pregnant woman out there to be aware of her heart in pregnancy and to not let symptoms go unchecked.  If you have questions, Leah will be more than happy to talk to you about them.  Email me cori@ladybowtie.com and I will put you in contact with each other.  Please share with the pregnant ladies in your life.  Thank you.~LadyBowTie

9 Comments

  1. Melanie says:

    Leah is one of my fellow heart sisters. And a dear one, at that. Thank you so much for taking the time to tell her story and help advocate for PPCM awareness. It brings hope to us all. :)

  2. Shawna Gurgul says:

    So glad you’re ok and thank you for sharing your story! I am a PPCM survivor also and didn’t get to meet or see my son for 18 long, torturous days because I went into cardiopulmonary arrest during pushing and needed CPR and emergency c-section, then was in an induced coma for over week, then in various ICUs. I don’t remember my labor or any part of it. It was the scariest thing for myself and my family, but I am proud to say my heart EF is 56%!!! :)

  3. Cori says:

    You are all very welcome happy to do whatever I can for the cause and to get the word out. Keep sharing ladies the world needs to know. xoxxo

  4. Yvonne says:

    I have just been diagnosed 5 weeks ago. I had severe pulmonary edema and nearly died. My Ejection Fraction at diagnosis was 35%, but I also have a moderate mitral regurgitation and severe systolic dysfunction, so assuming I have failure on both sides. Its scary and I hope I live to see my baby daughter grow up, I am waiting for my next scan which is 4th October to see if I have improved, I hope so, I feel better, other than some chest tightness. My baby was diagnosed with diaphragmatic hernia at 20 weeks, i was also operated on at 15 weeks to have a tumour removed from my ovary, she was give 50% chance at birth, and amazingly has sailed through everything, she had surgery at 2 days old to repair her hernia, and was out of intensive care before me. Everyone was praying and sending positive thoughts for her, no one would have thought I would have caused all the concern! lol.

    • Leah Tomecek says:

      Hello!! Yvonne- I am so happy to hear your little girl is a trooper and beat those odds!! I know it is extremely scary to have a sick newborn- Eli was in the NICU for 3 weeks and had life saving surgery when he was 3 days old…while I was in the ICU in CHF. PPCM is associated with the left side of the heart, that is where the mitral valve is as well. With PPCM mitral valve leakage is very common. As for the severe systolic dysfunction I was diagnosed with that as well- it is part of the congestive heart failure- it is the easier of the two types (of sysfunction) to be recognized because your EF goes down. I would talk to your dr. about your concerns for being in heart failure on both sides. THe good news is you have survived and with the right treatment many women go on to recover. You will see your little girl grow up. The one thing that is super important is to talk to your cardiologist and if you are not satisfied then find another one…..there are some who have very little experience with PPCM. If you are on Facebook there are support groups- feel free to look me up and I can send a request to add you. Take care!

  5. summer says:

    my name is summer I’m 20 years old and have a son who is almost 6 months old.. I was also told I had ppcm.. I had gone to the er so many times they got sick of seeing me. I told them I couldn’t breath even when I sat up and I was sweeling even when I had been sitting for hours.. My mid wife put me on bed rest that next day after she did I went back and knew something was wrong. I w as taken to a hospital by an emt 3 hours away. They said I had mild preeclapcia I was there 2 days and his heart starting being in disstress so I had emergency csection.. I was releast from the hospital 3 days later but he was not I had him at 28 weeks and 2 days. The next day I went back and they diagnosed me with ppcm.. Said never to have another baby again bc I also was told I have a blood clot in my lung.. 2 weeks ago I found out there in no blood clot and my heart is almost back to normal. Would you ever have another baby after all you had been throw with ur son?? Bc I want another one but worried.. It’ll be years but still

    • Cori says:

      Summer -
      Thank you for sharing your story.

    • Leah Tomecek says:

      Hi Summer!!! I am sorry you are going through this but remember you ar a survivor! I know how you feel about the ER they were so tired of seeing me…yet I knew deep down something was not right. Do you know what your EF is? Is your heart still enlarged? The doctors were very quick to tell me no more children however I am a 2 year survivor and I am off all my heart meds and remain stable. I think it’s very easy for them to say NO WAY to more kids however if you are treated correctly and quick enough recovery is a possibility. Right now I am working with a perinatoligist and a cardiologist to assess my risk of relapse. When I was in the hospital in CHF they found a severe leak in my heart and it was fixed through open heart surgery so I want to be very careful that I will not relapse. There are certain criteria that if you meet your chances of relapse are lower (if you see the websites in the article all that info is on those websites). How is your son now? If you are on Facebook you can look me up there are PPCM survivor groups and I can request to have you join. Take care!

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I have more than a few theories on style. LadyBowTie is a site designed to celebrate those thoughts on fashion, beauty, and fearlessness. LadyBowTie encourages positive self-esteem and freedom of expression through personal style. It also encourages a healthy relationship between fashion and your wallet. And last but not least, LadyBowTie is here to educate on aspects of the fashion and beauty industry through style news, street-style pics, interviews, trend/forecasting, articles, weekly series, and readers’ suggestions. ~Cori a.k.a. LadyBowTie

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