Our second child, Molly Marie, was born on April 17, 2008 (at 29 weeks and 5 days gestation) after a long battle with a rare combination of severe congenital heart defects. Our baby girl lived 14 precious minutes before she went to Heaven. Molly’s big brother and our son Sean Owen was born on October 2, 2003, via c-section at 41 weeks, after a long augmented labor. Sean is a healthy, fun-loving 13 year old and does not have any heart defects to our knowledge. We feel very blessed and lucky that our third child, Sean and Molly’s little sister, Abigail Grace “Abby” was born with a healthy heart on September 17, 2009, via planned c-section at 39 weeks.
When we were 14 weeks 4 days pregnant, it was discovered, through an echocardiogram, that our daughter Molly had both electrical and structural heart defects. However at 12 weeks 2 days we had the first indication that something was wrong with Molly’s heart, when an abnormally low heartrate was found via ultrasound. The electrical defect was 3rd degree or “Complete” Congenital Heart Block in which her heart had an abnormal rhythm/conduction system. The structural defects were that Molly’s heart only had a single ventricle and only one valve. Molly also had Heterotaxy Syndrome or Left Atrial Isomerism, which means that her heart and stomach were on the right side of her body, instead of her left.
Between 14 – 26 weeks gestation we saw our perinatal cardiologist every two weeks and sometimes weekly, for echocardiograms. I took Terbutaline and then later added Digoxin to the mix, both oral medications, that Molly received through her placenta/umbilical cord, between 20 – 26 weeks gestation in effort to try to help Molly’s heart beat faster and be stronger. At 23 weeks 4 days ascites (fluid in Molly’s abdomen) was discovered, which is a significant sign of impending heart failure. At 25 weeks 4 days the ascites had gotten considerably worse, despite our efforts to do everything we could medically to help Molly and we decided I would stop taking the medication. Molly was truly a fighter and surprised us all with how long she survived after I stopped the medication.
At 28 weeks and 4 days Molly had developed full-fledged fetal hydrops, fluid had accumulated in her head, heart, lungs and so much in her abdomen that it was measuring close to full term and thus so was my uterus. At that point our doctors’ concern moved to my health and safety, as they worried about her uterus rupturing. So a c-section was scheduled to deliver Molly. We did not know if she would survive to her birth and we are greatful to have had the little time we did have with our baby girl alive.
We have been through a lot on our path to build our family since we began trying to conceive another child in July 2004, including two early miscarriages and an interstitial ectopic pregnancy. We have a strong faith and believe that though our daughter did not live long, her short but very special life was not without purpose or reason. We feel very blessed and inspired by the support and encouragement that we have received from our family, our friends, other heart families (who know our joy and pain all too well) and other kind people who have been part of our journey with Molly.
Things I Have Learned From Having Molly in Our Life (I read this at her memorial service.)