When Mama’s Heart is too big: Peripartum Cardiomyopathy

January 14th, 2011

Mamas on Bedrest, despite all the love in your heart for your babies, your heart can actually become too big!

Such was the case for Brenda Torigiani (Pictured left at 36 weeks,  just before her delivering her daughter, Right before pregnancy). This 22 year old first time mama was eagerly awaiting the birth of her daughter and looking forward to subsequent pregnancies. But when she experienced marked swelling, elevated blood pressure and  severe shortness of breath  her condition became life threatening. Her daughter was delivered via cesarean section at 36 weeks when she was diagnosed with congestive heart failure and an enlarged heart.  Brenda had peripartum cardiomyopathy. Your can hear Brenda’s story here.

Peripartum Cardiomyopathy occurs when a mama’s heart dilates (enlarges) during pregnancy and the heart muscle loses its elasticity resulting in congestive heart failure. The large, sluggish heart is unable to accommodate the additional fluid volume created by pregnancy. It does not pump as efficiently; blood and fluids pool in the body tissues causing marked swelling(Below, Brenda Torigiani’s feet at 7 mos). Oxygen delivery to cells is decreased and fluid is often trapped in the lungs causing difficult,

rapid breathing. Other symptoms include high blood pressure, increased heart rate, cough and inability to urinate (urine output is often decreased, scant or not at all). Clinically, patients have have an enlarged heart on echocardiogram, an abnormal EKG, heart murmur, venous distention, and an ejection fraction (amount of blood the heart pumps) less that 50%. Heart valves typically are not closing properly and may be damaged, allowing for back flow of blood into heart chambers and the lungs.

Peripartum Cardiomyopathy typically presents in the final weeks of pregnancy. A rare condition, it affects only 1 out of every 3000 to 4000 pregnant women. However, if not diagnosed and treated, patients can acutely experience “florid heart failure” essentially drowning in their own body fluids. These women are at increased risk of thromboembolism (blood clots that can migrate to the heart, lungs or brain), stroke and sudden cardiac death. Many women require heart transplants. Others are managed medically with drugs.

The exact cause of peripartum cardiomyopathy is unknown. Some theorize that it is a result of a viral or inflammatory process causing a myositis (inflammation of the heart muscle). Others theorize that it is an autoimmune process. Unfortuantely (or fortunately) so few women experience peripartum cardiomyopathy that good, controlled studies have not been possible.

For now, peripartum cardiomyopathy is treated like any other idiopathic cardiomyopathy (enlarged hearts that have no identifiable origin). The first step is to stabilize the patients and this is done by diuresing (drawing off) the excess fluid and relieving the strain on the heart. Patients are given aggressive diuretics and  medications to help the heart pump more effectively, to keep the fluid volumes traveling through the heart low and to reduce blood pressure and heart rate. They are placed on water and salt restrictions as well to control swelling as moderate exercise such as walking and cycling to increase cardiac function. (A goal is to keep the ejection fraction -the heart’s pumping index- above 55%).  Many patients will suffer irreversible heart damage and be at increased risk of sudden cardiac death. For these women, an implantable cardiac defibrillator may be necessary. These women are also at increased risk of thromboembolism and will need anticoagulant (blood thinning) medications. Some women will respond well to therapy and the cardiomyopathy will resolve within 6 weeks to 6 months post partum. For those that do not,  a heart transplant may be necessary. Women who do not have marked improvement in symptoms within the first few weeks post partum have a poorer prognosis as do African American women, women who have had several children and women older than 30 years old. Sadly, for many women the complications are fatal-not only for themselves but also for their babies.

Most women who have peripartum cardiomyopathy are advised not to have any more children. However, some women go on to have additional pregnancies. The outcomes are variable.

As for Brenda, she would like to have more children, but currently her OB and cardiologist have advised against this for the immediate future. She hopes that she’ll be able to have one more biologic child. She and her husband have already planned to adopt. (pictured here with infant daughter Chyanne)

Peripartum Cardiomyopathy is a rare but life threatening medical condition that affects women of childbearing age. It’s origin is still unknown but it can be managed. If you are pregnant and experience:

  • Rapid weight gain
  • Marked Swelling
  • Difficulty breathing
  • Chest heaviness
  • Cough
  • Rapid heart beat
  • High Blood Pressure
  • Disorientation
  • Fatigue

Be evaluated by our doctor immediately. You may be developing or have heart failure. Treatment needs to be initiated immediately to avoid any progression in heart failure, to minimize damage to the heart muscle and to save your life and the life of your baby.

Thanks to Brenda Torigiani for sharing her story and the photos chronicling her ordeal.

References

A. Nabhan, MD “Peripartum Cardiomyopathy” ASJOG vol 2 March 2005. pgs 231-237

D. McNamara, MD “Treatment of Peripartum Cardiomyopathy” Heart Failure section, Cardiovascular Institute of the University of Pittsburgh Medical Center, Pittsburgh, PA 2001.

M. Carson, MD “Peripartum Cardiomyopathy” MedScape Article, September 8, 2010

Resources

A Mother’s Heart– A peripartum cardiomyopathy support network.

Peripartum Cardiomyopathy Survivors! Facebook page

7 responses to “When Mama’s Heart is too big: Peripartum Cardiomyopathy”

  1. Natasha says:

    This is such a great blog. I looked at the picture of Brenda’s feet and had a flashback. I wish my ob-gyn knew to test for heart issues after seeing my feet like that and putting me on bedrest. I’m sure more could have been done. I’ve actually started a page on facebook called My Heart Rocks and I’m trying to get the word out about this type of cardiomyopathy. I also want to get informational pamphlets put into every ob-gyn office and materinty ward across the US and the world.

  2. Darline says:

    And so it shall be, Natasha! Thanks so much for your comment and for working so diligently to get the word about about Peripartum Cardiomyopathy.
    If there is anything that we can do to help you spread the word, please let me know!!

  3. Natasha says:

    You are so welcome. I was listening to the podcast as well and Brenda went through so many things prior to the birth of her daughter. I was also 22 when I was diagnosed. Originally, when I was 32 weeks, the women at my job told me I needed to tell my ob-gyn about my feet swelling. So I called him that day and let him know and was told that all pregnant women’s feet swell. So I told him that he didn’t understand and hung up. When I left work that day I went straight to his office walked around his desk and told him to look. When he saw my feet he immediately wrote up a note to take me out of work and put me on bedrest. Never was I tested for anything. But I was going to his office every week to have my BP checked and it was getting higher and higher. No matter how still I stayed. Finally in my 35th week, they admitted me into the hospital. I was told that if my BP didn’t go down they would have to induce me. My BP did go down but they were still checking my protein for 24 hours. I was told that Thursday evening I could go home the next morning. Unfortunately,yet fortunately, Friday morning my water broke.

    My son was born June 30, 2000. I was diagnosed after misdiagnosis of bronchial spasms in the beginning of September, 2000. My EF was 15%. Today my EF is 20-25%. The highest my EF has been since being diagnosed is 40%. I have an ICD and am told that my heart is doing what it needs to do even though it is not strong so I don’t need to be on a transplant list now, but will in the future.

    I wish I knew what you could do to help…LOL I am trying to start a Not for Profit organization and see if I can get backing from AHA or some other organization. Feel free to send me an email or find me on facebook through my page. Thank you!!!

  4. Brenda says:

    Hi there Darline this is Brenda T. Just wanted to let you know that I am doing great and Chyanne will be turning three in just over three months. I have been doing some research on a subsequent pregnancy in the future. I have been cmpletely off meds for almost two years. Feel free to email me at anytime

  5. Darline says:

    Wow Brenda, That’s Fantastic!!!
    I wish you all the best and do keep me posted!

  6. Aimee Sturm says:

    I was diagnosed with PPCM at 30 weeks pregnant. I was very ill during my pregnancy and could never catch my breath. I was so swollen I could not walk. Despite my complaints my OB told me I was just anxious. At 30 weeks my husband (an ER nurse) found me at home collapsed barely breathing. At ER I was diagnosed with congestive heart failure with an ejection fracture of 8%. My baby would have to be delivered emergently c-section and I probably wouldn’t survive, but I did. I was in the hospital the next 10 months , i went into total organ failure and had surgeries for a pacemaker and defibrillator. In May of 2007 I was listed on the heart transplant list and received a heart transplant that month. My daughter is now 6. I have had a lot of complications but wouldn’t trade my time here for anything in the world. I want to make it my goal that OBGYN’s screen for PPCM…it almost took my life because my doctor wouldn’t listen to me. I don’t want this to happen to anyone else!

  7. Darline says:

    Aimee,
    Wow!!! What an incredible story! Thank you so much for sharing. I want to underscore the importance of speaking up-strongly enough to be heard! I agree, what happened to you with regards to speaking w/your OB should not EVER happen! Your concerns are always valid and should be addressed. Your story is a potent reminder. I wish you well and thanks so much for sharing your story with us!!

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