By Christy Sillman
9 Dec

Labor of Love: Part 2

Friday, December 09, 2011

For the first part of this post, click here.

The moment I awoke from anesthesia with my very healthy son on my chest is something I will never forget—the gratitude I felt was overwhelming. I just felt so thankful that my body made this beautiful, healthy human and that my life was now extended through him.

Throughout my pregnancy I had frequent ECHOs, all of which were read as “stable.” Two months postpartum, my OBGYN said to me “see you next time.”

It was a rough recovery from the c-section, and I was so deconditioned from all the weeks of bed rest. I was in the midst of postpartum depression after the traumatic way my son arrived in the world, and the colic we battled. I had no idea having a newborn would be so demanding and I wasn’t prepared for how physically taxing it would be. I’m eternally grateful to my husband, family and friends who stayed with us those first few weeks to help me. When you’re an adult with CHD the phrase “it takes a village to raise a child” has a whole new meaning.

At four months postpartum I suddenly couldn’t make it up my stairs. I constantly felt short of breath, exhausted and weak. I approached several of my doctors, who all said “it’s exhausting being a new mom,” but I knew it was much more than motherhood that was getting me down.

After five months of testing, misdiagnoses and misread ECHOs by my “interested” cardiologist with good intentions, I finally traveled to see my new ACHD cardiologist and was diagnosed with postpartum dilated cardiomyopathy.

I was madly in love with my son and so the thought of leaving him from this devastating new diagnosis was overwhelming. We developed a treatment plan, with many new cardiology meds. It had been years since I had taken anything beyond a baby aspirin, and suddenly my life turned upside down with medication side effects that sometimes floored me.

I was forced to leave a job I loved in search of part-time work with a better schedule. I’m happy in my new job, but the realization that I’m not the same person I was before my pregnancy was very hard to accept.

Now, almost two years later, my heart is doing better, and I’m starting to feel better. Pregnancy and motherhood changes any woman, but when you have a pre-existing condition that is directly affected by the stress of pregnancy— your blood volume goes way up in pregnancy and that does put stress on the heart—it’s a whole new ballgame.

At 31 years old, I am facing a tubal ligation. The risks are too high for me now. As a very wise professional told me at the ACHA conference this past year, “You went into your pregnancy with one heart condition. You now have two heart conditions; a second pregnancy is strongly discouraged.”

My advice to any other ACHD women thinking of embarking upon the pregnancy journey would be to surround yourselves with a solid team of appropriate professionals and discuss a monitoring and treatment plan as soon as possible. I don’t know if my outcome would have been better had I done this, but I know I would have had a more stable emotional experience, and that solutions to complications would have come in a timelier manner. I’m trying to be nice here.

Also, make sure you have a strong support system to help you in the weeks following delivery. You’ll need help, and it’s OK.

Pregnancy is an amazing, wonderful and joyful time in any woman’s life, but for adults with CHD it is a risky endeavor that requires top care and monitoring.

I feel incredibly lucky to have my son. He is the light of my life and I still sit in awe at his existence. It isn’t fair to my son for me to take on the risk of pregnancy again, so if it’s meant to be we will add on to our family via adoption, but for now, I’m very content with our family of three.

Are you a woman with CHD who has been pregnant? What was your experience like and what advice do you have for other CHD women who may be contemplating pregnancy? Also, I don’t want to leave the men out—what emotional and physical challenges have you guys faced in fatherhood?

We were once babies who weren’t expected to live, and now not only do we live but some of us are giving life—either via pregnancy, surrogacy, or by providing life to adopted children. That is quite an amazing leap from the devastation and uncertainty our parents experienced when faced with our CHD diagnoses. It truly is a miracle.

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