AUTHOR: Carolyn Savage | POSTED: February 22, 2011 | COMMENTS: 5 Comments
CATEGORIES: Love This...Not So Much,
In October 2007 my husband Bob and I found out that we were pregnant with our second child, after struggling with secondary infertility and pregnancy loss for over three years. Our pregnancy was the result of our fourth Assisted Reproductive Technology (ART) cycle and our first Frozen Embryo Transfer (FET) cycle. When we were 14 weeks pregnant it was discovered, through an echocardiogram, that our daughter Molly had a rare combination of severe congenital heart defects (CHD). However at about 12 weeks gestation we had the first indication that something was wrong with Molly’s heart, when an abnormally low heart rate was found via ultrasound.Molly’s heart had both electrical and structural heart defects. The electrical defect was Third 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.
CHD can be hereditary and in some cases more than one sibling is diagnosed with them. However, our son Sean (Molly’s big brother) was born healthy and with no heart defects in October 2003. Sean was four years old during our pregnancy with Molly which made our journey with her even more wonderful and heartbreaking at the same time.
We faced a number of “Inconceivable Choices” throughout or pregnancy, beginning with whether to terminate, to be passive or to be aggressive in dealing with our daughter’s diagnosis. We never seriously considered termination. We found it much more difficult to decide whether to approach the remainder of our pregnancy passively or aggressively. Between 14 – 26 weeks gestation we saw our perinatal cardiologist every two weeks, and sometimes weekly, for echocardiograms.
We did a lot medical research, as well as soul searching so that when Molly’s heart began to fail we would feel as prepared as possible to make the choice whether to intervene. In this case intervention meant either that I would take medication in effort to try to save our child’s life or we would let nature take its course. The second option meant that it was unlikely that Molly would be born alive or that she would survive to a gestational age that would allow for even the faintest possibility of medical intervention after her birth.
Molly’s heart began to fail at about 20 weeks gestation. We chose to be aggressive, as I didn’t think I could live with myself if I didn’t believe that I had given our daughter every chance at life. Having used ART, including medication, to conceive Molly and to sustain her existence during the first trimester of our pregnancy, it made sense to us that we would also allow for the opportunity for our daughter to benefit from medical technology at this point in her life. I took Terbutaline and then later added Digoxin, 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 ascites (fluid in Molly’s abdomen) was discovered, which is a significant sign of impending heart failure. At 25 weeks 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 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 my 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 grateful to have had the little time we did have with our baby girl alive. Molly was born on April 17, 2008 (at almost 30 weeks gestation). Our baby girl lived 14 precious minutes before she went to Heaven.
It is hard to say if we would make the same choice given the opportunity to do it over again. Sometimes we second guess having taken the “aggressive” approach when Molly’s heart began to fail. Since in the end our baby girl died anyway, we wonder if we prolonged the inevitable for everyone involved. That also could be considered an unintended consequence of our choice. If we had gone with the “passive” option, Molly would have died sooner and we might have saved ourselves, our loved ones and especially Molly, from suffering for as long as we did during our pregnancy. However, we never gave up hope that our daughter might survive long enough to be eligible for potential life saving surgeries and thus it made sense to us (especially me) to try to help her stay alive as long as possible. We believe that we made the best decisions we could with the information we had at the time and we have no regrets about that.
We have been through a lot to reach this point on our family building journey and we have had to make other difficult choices along the way. In addition to losing our baby girl, since we began trying to have another child in July 2004, we also experienced two early miscarriages and an interstitial ectopic pregnancy. We have a strong faith and believe that though our daughter Molly did not live long, her short but very special life was not without purpose or reason. We are grateful for and inspired by the support and encouragement that we have received from our family, our friends and other kind people who have found us/our story one way or another. We also feel very blessed and lucky that our third child, Sean and Molly’s little sister, Abigail was born with a healthy heart in September 2009.
Kathy Benson, a proud stay at home mom to her two living children, is finding joy in the journey after dealing with secondary infertility and pregnancy loss for over five years. Kathy and Carolyn met and became friends in 2007 through the discussion forums on www.ivfconnections.com when they were both trying to conceive children through IVF. Kathy blogs at Four of a Kind (formerly Three of a Kind Working on a Full House…) www.chicagobensons.blogspot.com and you can follow her on Twitter @FourofKind2009