Prenatal Diagnosis – A Follow-Up

I posted this in the “comments” section of Red’s last posting, but thought I would make it into a posting of its own…

Elizabeth, you touch on a great point; prenatal diagnosis comes with its own set of blessings and curses. We, like Red, had a daughter with anencephaly, which is a neural tube defect that prevents the brain from developing as it should. Anencephaly is an untreatable and fatal condition, so we knew that our daughter would die either at birth or shortly after birth. We found out about Lucy’s condition at our 20 week ultrasound, and for us there was never a question of whether or not we would carry her for as long as we could. In our case, knowing about Lucy’s condition before her birth was a blessing because we were able to spend the rest of the pregnancy bonding with her and preparing for her birth. We wanted to be able to take advantage of every moment that we had with Lucy after her birth, so we planned all of the details in advance, and were also blessed to have many family members and wonderful friends be with us to meet our daughter. Had we not known of her condition, we would not have been able to do this.

Sadly, the vast majority of parents who receive a prenatal diagnosis of anencephaly decide to terminate (98%), and they never get the chance to hold their baby in their arms or say “good-bye” like we did. We feel immensely blessed for all of the time that we had with Lucy – even though she was stillborn, it was important for us to hold her, kiss her, bathe and dress her, and then, when the time came, to hand her over and say our farewells. Nothing about the experience was easy, but it was natural and good, and our family wouldn’t be the same without Lucy as a part of it.

One of the problems with prenatal diagnosis lies largely with the advice given by nurses and doctors when the news is “bad”. The doctor on call the day of our 20-week ultrasound strongly advised us to “see her friend” at another hospital who could “take care of everything for us.” Even after we told her that we would be carrying our baby to term, no questions asked, she continued to hammer home the point that our baby could not live outside of the womb, that there was no chance of survival…In her mind, there was no point in continuing the pregnancy because the outcome would certainly be death. The picture that she painted was grim, and some of the information that she gave us was inaccurate. Luckily, we already knew a lot of the facts about anencephaly, but many parents who receive a prenatal diagnosis do not know the facts already and have to rely on what the doctors tell them. Unfortunately, many parents are talked into terminating their pregnancies in a haze of confusion and extreme sorrow, and the effects have been devastating for many families and for society as a whole.

Please understand that I am not trying to say that all doctors are uncompassionate and misleading – we encountered many wonderful nurses and doctors along the way, and for them we are truly thankful. But the sense that I’ve gotten is that the medical profession in general has taken the opinion that parents “deserve” a healthy baby, and that a child has a right to be born healthy; thus, if there is a prenatal diagnosis to the contrary, it is in everyone’s best interest (the parents’ and the child’s) to terminate the pregnancy. This, of course, is also a pervasive attitude in our society…Sad, but I fear that it’s true. Our journey with Lucy would have been much harder had we not had the love and support of so many wonderful friends and family members; it saddens me to know that many people do not experience the same level of encouragement and support, and I pray for them every night.

One last point, and then I’ll stop :) I fear that our society no longer knows how to deal properly with suffering. We do not know how to be with others in their suffering, and when suffering comes our way, we feel that we are all alone in our plight. We are so uncomfortable with vulnerability and weakness that we push it away at all costs. This is not a healthy state of affairs for individuals, families, or society in general…

Saint Mary, Mother of Mercy, pray for us!


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