Today’s guest post is from Mary. We met Mary last summer when she attended one of our writing workshops with Robin Silbergleid in East Lansing, MI. Mary shares a bit of her story of infertility and parenting children with congenital heart defect. There are images of children and parenting in this post, as well as references to loss. Thanks so much, Mary, for sharing your story with us!
Correlations of the Heart: Infertility and Congenital Heart Defects
Whether you have just been diagnosed with infertility, or you have been dealing with it for quite some time, you know that it is often devastating and can test any relationship. Whether it’s getting that positive pregnancy test, finding a gestational carrier, or finally making it to delivery after suffering multiple miscarriages, you have been through so much more than the average person by that point that you feel like the world owes you a healthy baby. And, fortunately, the majority of people get just that. Some of us don’t. This is our story of what happened next, and why it matters to you.
Discovering I was infertile was heart-wrenching. Once I found out why, it wasn’t too surprising—my appendix had ruptured when I was 20 and scarred my tubes closed. It still gutted me, but I felt privileged to have a simple explanation because my diagnosis came a solution—in vitro fertilization (IVF). We would just bypass the blockages and *poof* a baby should easily be ours. We were lucky—we got pregnant on the first try with lots of embryos left over for siblings. We were overjoyed. Our daughter was born at 39 weeks and everything seemed fine. Except for being a little blue initially, after an evening with some extra oxygen, she was good to go, and we took home our perfectly healthy baby. It wasn’t until she was almost five months old that we learned there might be something wrong. At six months, she was officially diagnosed with a complex congenital heart defect (CHD)—a missing left pulmonary artery, and a hole between her ventricles (or ventricular septal defect).
“You have been through so much more than the average person by that point that you feel like the world owes you a healthy baby. And, fortunately, the majority of people get just that. Some of us don’t.”
After navigating and surviving the world of open-heart surgery and the implications of a lifetime of medication for our daughter, we finally decided we were ready to try for another child. Although the chance of another child with CHD was greater having already had one, the total chance was still small—something like 2.5%, up from 1%. Our second round of IVF resulted in a miscarriage. Our third round failed completely. Finally, our fourth round gave us our third pregnancy. We anxiously waited to see if we would have another miscarriage, but even with heavy bleeding early on, a few weeks of bed rest seemed to put us in the clear. At 18 weeks, we elected to undergo a fetal echocardiogram to check out the baby’s heart. The longer the examination took, the more worried we became. Sure enough, the news was gut-wrenching. Our little boy had a different, rarer, and more serious CHD than our daughter. He ended up having open-heart surgery at seven days, and, although prognosis originally looked good, at four months or so, his growth stalled. He bounced back and forth between the hospital and home with increasing frequency, and endured multiple gastrointestinal surgeries and a second open-heart surgery. Sadly, he ultimately suffered heart failure and passed away shortly before he turned 11 months old.
After his death, we joined with other heart families to champion increased money and research for CHDs. We were stunned with the statistics we learned. Even though CHDs are the most common birth defect, affecting 1 in 110 children, and kill more children under the age of 1 than all forms of childhood cancer combined, there is little publicity and research funding. The cause of most CHDs is unknown, and surgery is rarely a cure; more often it is a temporary fix.
As we share our story to help raise awareness of CHD and increase research and funding, we also feel obligated to share another piece of the puzzle. There is a correlation, as yet not completely understood, between infertility and birth defects. Some research indicates that utilizing assisted reproductive technologies (ART) increases the risk of having a child with birth defect, including CHDs. See, e.g., http://www.medicalnewstoday.com/articles/251768.php (Last accessed February 15, 2016). Other research suggests that this increase is related to the increased frequency of higher order multiple births in the IVF population and not the use of IVF itself. See, e.g., http://www.ncbi.nlm.nih.gov/pubmed/20498466 (Last accessed February 15, 2016). Still other research suggests that the cause of the birth defects is related to factors that cause infertility. That is, infertile couples who ultimately conceive naturally have the same increased risk for birth defects as those who use ART. See, e.g., http://blogs.nature.com/news/2012/05/in-vitro-fertilization-off-the-hook-for-causing-birth-defects.html (Last accessed February 15, 2016).
This is not to scare you away from trying to conceive—whether naturally or using ART. The chance of having a child with a birth defect is still very small. But, you should be aware that it can happen. Infertility is hard on a relationship. Having a medically needy child is an added degree of stress and difficulty as well. Experiencing one after the other exponentially increases chances of divorce. But knowledge is power. Forewarned is forearmed. Going into the process with your eyes wide open puts you in the best position to survive as a couple whatever lies ahead of you, be it natural conception, surrogacy, adoption, IVF, childlessness, multiples, a medically needy child, a healthy child, or any combination thereof. In the end, my hope for you is the same as it is for myself—no matter your struggles, no matter your circumstances, no matter your final destination, may you find happiness and joy.