"You never truly appreciate life until it’s almost taken away from you." - Amber DeMarsico

Amber DeMarsico was shocked and delighted to learn she was having twins. After a seemingly normal pregnancy and a c-section delivery, her health took a turn for the worse when she was diagnosed with Peripartum Cardiomyopathy, a form of heart failure from pregnancy. Balancing the joy of first-time motherhood with the fear of a life-threatening heart condition certainly wasn't what she imagined. But even with a weak heart, Amber's love for her babies remained strong. 

She is one tough momma!

Every Ella: Tell me about yourself. 

Amber DeMarsico: I grew up in a small town in Florida. My parents divorced when I was still young, so I lived with my mom and older sister and visited my dad on the weekends. My mom worked a lot of overtime to make ends meet, but I don’t remember going without… except for a pony [Laughs]. I looked up to my older sister, but she was much to cool to be around her bratty little sister. Some of my fondest memories are riding 4wheelers in my aunt’s pasture, large family gatherings for birthdays/holidays and delivering Meals On Wheels with my papa.

What did you study in college?

I went to Florida State University and after many degree changes, finally settled on Secondary Mathematics Education.

What is your current profession?

I have been fortunate to be home with my twins for their first year, but I will be returning to teaching this coming school year.

Did you know you could have twins?

My great grandmother was a twin, and my Nana had twin brothers. I have 2 cousins with sets of twins, one has 2 girls, the other has 2 boys. So I always knew twins were in my generation, but never really thought I would have them (since there were so many in our family already).

What was your immediate reaction with you found out you were having twins?

We had thought I may have miscarried the baby. Just when I was prepared for the doctor to say we lost it, she announced we were having twins! My husband and I were speechless. We were excited and scared at the same time.

Was the pregnancy difficult?

Believe it or not, I had a pretty “normal” and healthy pregnancy. I was always tired, and my belly grew bigger by the second. Near the end, I had extreme swelling, which led to pitting (edema) in my legs. Looking back at pictures, you could even see my face was pretty swollen. It was getting harder to breathe but with every symptom/concern I brought up to my doctor, they assured me it was all normal especially since I have a small frame carrying two babies.

Tell me about the labor.

There was no labor. I went into the hospital late at night because I just felt off. I could usually feel better by the end of the day after resting, but something just didn’t feel right. I checked my blood pressure and it had skyrocketed. In the middle of the night, I tested positive for pre-eclampsia. My doctors were debating to hold me until I hit 36 weeks (I was 35 weeks and 5 days), or take the babies right then. They decided taking the babies was the best option (and most likely saved my life). After I was given a blood transfusion (low iron) my babies were born via emergency c-section. I saw them for a half of a second before they were whisked away to the NICU.

What is Peripartum Cardiomyopathy (PPCM)?

Peripartum cardiomyopathy is a dilated cardiomyopathy, which weakens the heart muscle and can lead to heart failure. It usually occurs in the last month of pregnancy up to 5 months after delivery. Some symptoms include shortness of breath, difficulty breathing (upon exertion or when laying flat), edema (pitting above and below knee), unexplained cough, palpitations, and abdominal pain. Dr. James Fett has dedicated his work to finding more information about this disease. See his website for new research and more about PPCM. 

Did you know what PPCM was before giving birth?

I had never heard of PPCM. I chalked all my symptoms (shortness of breath, swelling, trouble breathing while laying flat, coughing) up to anxiety from living an hour and a half away from the hospital and leaving my babies in the NICU. It took a NICU nurse (because I ignored my husband and mom’s pleas) encouraging me to get checked out the night before the babies got discharged.

How did you discover you had PPCM?

After a cat scan showed my lungs were full of fluid, I had an echocardiogram. My OB told me I developed a rare disease called Peripartum Cardiomyopathy – in short, heart failure from the pregnancy. After the diagnosis, I was sent to the cardiac unit. My nurse stayed late just so I could see my babies before they were discharged and taken home, as the CACU unit wasn’t safe for them. The first time I got to hold them without any wires or IVs, I was full of them.

I didn’t see them for 3 days, since I had to stay in the hospital. I cried all day and finally cried myself to sleep. I wanted to slap the nurses who kept reminding me I was the youngest patient in the cardiac unit. At first I felt cheated, and I was angry. I was angry because I was told I couldn’t breastfeed anymore -- the medicine my heart needed to recover wasn't known to be safe (or unsafe) to babies. I felt more like a science experiment (with all the doctors, questions, blood work, medicine) than a woman who just became a mother for the first time. I felt so alone and was desperate to get home to my babies as soon as I could.

Upon leaving the hospital, I was put on a low sodium diet and a slew of medications. I lived the first few months in denial. I was only 28, and relatively healthy, how could I be in heart failure? My mom stayed with us for 2 weeks after I got home, so I got much needed rest but still always felt extremely tired (and not because I had 2 newborns at home).

Give us an update on your current condition.

At my 3 month echo, I had only increased function to 40-45% (my beginning was 38). I finally stopped asking “why me” and got over the pity party. I was so happy to be alive and there for my babies, I got outside as much as I could (despite the snowy weather) and walked.

7 months post diagnosis, a stress echo found that I recovered to 57% and my heart had returned to normal size. I am currently on all my medications and will be for life. I continue to watch what I eat and try to walk as much as possible.

You started a blog to discuss PPCM. What made you decide to do that?

When I was alone in the hospital, I searched and searched for peripartum cardiomyopathy women and found nothing. I had never felt so alone in my life, and no one understood what I was going through. I mean a mother should NEVER be apart from her babies, yet there I was alone and lost. I started my blog to help raise awareness, my journey with PPCM in hopes to find other PPCM moms, and of course show off my little leaches.

Have you been able to connect with other PPCM survivors?

After I started, I actually met more women through a facebook group. The support and love from the heart sister community is so amazing.

Do you have hopes to do more for helping PPCM women?

My biggest goal is to raise awareness, because so many people have never heard of this. I honestly believe maternal deaths could be prevented (does the quad mom who passed sound familiar?). Since I felt so alone after my diagnosis, I want to find ways to reach out to new moms after they find out their life has changed forever. I'm working on ideas for that.

Is it difficult to have more children after you've suffered this condition? And if not, do you want more children?

Women who have recovered are often supported in their decisions to have more children with a very close monitored pregnancy. I’m often told I have my boy and girl, don’t chance it, but I’m not sure our family is complete yet. With every disease comes a risk. Pregnancy carries the biggest risk for relapse, so it is something we will reconsider in the future, considering my heart remains recovered. I’m not ready to say we’re done, but I’m also not ready to go through all this again if my heart relapsed.

 What's the biggest joy that comes with motherhood?

Everything. I never knew how much love I could have. Their laughs, smiles, facial expressions, personalities, curiosity, and even cries make my heart burst with love. I mean, I thought I had a pretty good life BK (before kids), but none of that seems to matter now that I am a mom.

And the biggest challenge?

Feeling like a failure. There are some days where I can’t feed them only organic (like every day) or when I just have to step away and do some work. I want to give them the best and keep them away from all the evil in this world, but I know life is inevitable. I just pray my best is enough.

 Name a woman who has inspired your life and why.

All of my heart sisters, living and passed. Each of our stories are so similar, yet so unique and some are fighting a really tough fight. There are some with ICDs, some waiting on a heart transplant list, some recovered for 20+ years and some who have passed unexpectedly because of PPCM. They each live their life with the burden of PPCM and although I’ve never personally met them, they are always there to encourage or support when any heart sister needs it. We are all fighting the good fight.. and we are survivors!

If you could give one piece of advice to younger self, what would it be?

Don’t take anything for granted. Live for today. You never truly appreciate life until it’s almost taken away from you. It’s ok to not be perfect…

AND to stay for one more football season at Florida State [Laughs].

To find out more, check out Amber's blog!