By Heart: The Path to Motherhood with Congenital Heart Disease

By Heart: The Path to Motherhood with Congenital Heart Disease

by Kimberly Rex

When my sister, my cousin, and I were little girls, we didn’t just play house like other children.  We played “life.” We would begin in elementary school and move all the way through high school. There, we met the boyfriends we’d soon marry in pretend weddings. Stuffing pillows under our shirts, we’d walk with our tiny hands on our aching backs, until we gave birth to our Cabbage Patch preemies, cradling them in our arms and kissing their smooth, plastic foreheads.

My young mind didn’t know then that my own path to motherhood would be nothing like the one we created in our game.

I was born with tetralogy of fallot (TOF), a type of congenital heart disease (CHD). TOF is a combination of four structural heart defects that lead to poorly oxygenated blood circulating throughout the body. Narrowing of my aortic valve and my heart’s unusual location on the right side of my chest caused more complications. My first open-heart surgery was at sixteen months; three more followed at 16, 29, and 32.

In my mid-twenties—the years between my second and third surgeries—I met my husband Anthony, married him, and got ready to start a family. Pregnancy, though, was not a given for me. It was a question that needed to be asked and answered.

According to Jonathan Ginns, MD of Columbia University Medical Center in New York City, the vast majority of female CHD patients are able to be pregnant, but all women with CHD should see an adult congenital heart disease specialist to make sure they are part of this majority. “A small minority may need some form of treatment before getting pregnant and in a small number, pregnancy is contraindicated.”

In the early months of 2009, my husband and I asked my cardiologist our most pressing question:  could I get pregnant?  In the simplest terms, her answer was yes, but she listed a number of risks.

Ginns explains that the risks of pregnancy for CHD patients are dependent on the individual condition. Different conditions have different risks, such as heightened risk for arrhythmia, cardiac dysfunction, and blood clotting issues.

For me, the chances of arrhythmia during pregnancy were very high. My doctor also explained that the stress of pregnancy might shorten the time until I would need my third open-heart surgery and possibly weaken my heart. She believed, though, with the right care, I could handle a pregnancy.

I never actually asked what that care would entail. I never got that far. Because as I sat before her mahogany desk, and she spoke about each risk, it was clear that while pregnancy was possible, it was not sensible, at least not for me.

I had dealt with arrhythmia before. I had felt my heart beat so fast, it seemed to be running away from me, taking my breath as it went. I had been shocked by my internal defibrillator eleven times, each time the electric jolt slamming into my sternum, knocking me into anxiety and depression.

That risk alone dissuaded me, but the biggest deterrent was not knowing what the pregnancy would do to my heart health. For me and Anthony, it was more important for me to be healthy enough to care for our children—to be there to make breakfast, smooth a band aid on a fresh cut, and kiss their cheeks at bedtime. That all mattered more to us than my carrying those children in my womb.

Still, it was hard to say goodbye to the idea of pregnancy. I could no longer stand in the mirror, push out my stomach, and imagine how it would look with a baby inside. It was an intangible loss—one I couldn’t see or touch or understand—like losing something I never had.

But as spring came, we had new hope. After weighing our options, we chose gestational surrogacy. With the help of a specialized attorney, we found Amy, a sweet-voiced young mother from Illinois.  The first time we spoke on the phone, I prepared myself with a pen and legal pad, ready to record details about who Amy was.  But as we spoke, I took the pen, drew a big smiling face on the yellow paper, and put the pad down next to me.  Amy just felt right.  It was never awkward.  The first time we met, we hugged like old friends.

She would be a gestational carrier. She and I would split the IVF process. As she took the medication to prepare her uterus, I would take the drugs that stimulate egg production. After my eggs were extracted and fertilized with Anthony’s sperm, one or more embryos would be transferred into Amy’s uterus. Hopefully, one would become our baby.

The process moved forward one step at a time. Our lawyers negotiated a contract, and we scratched our signatures onto the pages with anticipation. We found an infertility clinic experienced in surrogacy, and Amy and I began our medications.

As the time to extract my eggs drew near, the October chill turned to November cold, and I went for my biannual visit at the cardiologist. There, in that same office, in front of that same desk, we heard more bad news.

Two of my valves needed to be replaced with open-heart surgery. Soon. I worried immediately about the surrogacy and the baby I was hoping to welcome home in eleven months, but my doctor advised that we go forward with the plan.

“If the surrogate becomes pregnant, we’ll make sure you are healed in time to take care of the baby.”

It was a hopeful sentence, but I knew what recovery was like. I knew the aches in my back and the crippling pain in my chest, breaths that only seemed to hurt and steps that seemed to take you nowhere. But I also knew nothing could make me want to recover more than my baby on his way.

In the end, though, he wasn’t on his way. He never was.

Our extraction and fertilization resulted in only one embryo. Even though we prayed and hoped when it was transferred into Amy’s uterus, on Christmas Eve we learned that she was not pregnant. Our baby was not coming. It was like losing a game when you are so close to winning. The almost just made it hurt more.

Our contract entitled us to two more attempts at pregnancy but with no frozen embryos, we could only try again by starting over—more tests, more meds, more procedures. After my heart surgery, I would start taking blood thinners permanently, adding new risks to the surrogacy process.

Once again, my doctor said it was possible. But once again, we put my health first. Perhaps I could have gone through the process without any harm, but we didn’t want to take the chance.

It was time to let go of the idea of a biological baby. I wouldn’t be able to spot my own smile on my child’s face or see my husband’s jawline, my grandmother’s eyes. I wanted those things. I wanted that genetic connection. I didn’t know yet that none of that mattered.

As I recovered from my surgery in March and my body found a way to heal, I found a way to make a family. As soon as I was well enough, we started the adoption process. It was a new road with its own bumps and detours, but one year later, we brought home our first daughter.  Four years after that, we met our second. Today, we are a happy family of four

As I study the latest information about CHD and pregnancy, I wonder if I really could have gotten pregnant eight years ago. Ginns explains that a decade or two ago, doctors were more conservative with their pregnancy recommendations for women with CHD. “Since that era we have learnt a lot more regarding the risks, and we have a much better sense of when we can and cannot give the “ok” for pregnancy.” His point is consistent with the recommendations adopted by the American Heart Association in January, which suggest that with the right management, most women with CHD can sustain a pregnancy. Ginns even added that any changes in the heart that happen during pregnancy usually resolve on their own after the birth.

In truth, my doctor didn’t advise against pregnancy, but I decided against the risks. If it were now, though, if it were today and I read the new recommendations, would I be open to getting pregnant? Maybe.

But now I know it doesn’t matter. Now, I have my daughters. My spunky six-year-old, who cartwheels wherever and whenever and throws her head back when she laughs, the same crinkle in her nose that was there at one year old. And I have my tiger. Two years old and dancing to every tune she hears and giving me a round-lipped “Oh” for every question I answer.

Now, I have them, and they are all that matters. If I could turn back now and change it all, if I could say yes to pregnancy and watch my belly grow with my baby inside, I wouldn’t. I wouldn’t change my answer. I wouldn’t change a single thing.


Kimberly Rex is a freelance writer and blogger at She lives in Staten Island, N.Y. with her husband and two daughters. You can often find her breaking her new phone, silently correcting grammar (her own included), and overanalyzing all things. Follow her on Facebook.

2 thoughts on “By Heart: The Path to Motherhood with Congenital Heart Disease

  1. KIMBERLY you captured me from the first sentence. You are Amazing, your story is as beautiful as you are. I admire your strength from the very
    beginning. You have gone through every step with such poise and dignity.
    I loved you as a baby and have loved you every step of the way and love the strong woman you have become. Bless you and your beautiful family Always.
    Love you,
    Aunt Janet

  2. KimberlyI have felt blessed when your mom introduced me to you ….meeting you and reading your stories…this and the story of your dad…you have given the gift to everyone who reads your word a sense of joy…such beautiful words from a beautiful heart of a women…May God continue to bless you and your family and continue to guide your heart to your words for us to read…
    luv you

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