Monday, May 5, 2008

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!


texas mommy said...

Kat--This is a beautiful post. I love your last point about vulnerability and suffering. You, Red and the governor of Alaska are such witnesses to love! Thank you for sharing.

Mary Alice said...

A few thoughts. You and Red have changed my perspective on many aspects of pregnancy, one being the fact that an ultrasound is in fact a diagnostic tool, not just a time to "see" your baby, so we do not bring along our older children to the test.

Our ultrasound this last time left some questions that needed follow up, and the tech recommended that I do it as soon as possible. I was (naively) confused as to the hurry until she explained to me that at 19 weeks I was close to the legal limit for "termination." At that point, my baby had a name and had, in some way, been a member of my family for several months, and so while I was concerned about making sure that we diagnosed any heart problem he might have, I was so shocked and disturbed that this would be part of the conversation.

Right Said Red said...


I'm so glad you typed this up for a post. Your thoughts are great, and I completely agree that there are serious problems with the way the medical community approaches prenatal diagnosis. It seems there is a real rush to "get things over with" and not allow grieving parents time to actually think about what they want to do. I know in our case, the hardest and most difficult part of the entire experience was the first week after the diagnosis. To be making big decisions in that week would have been unwise, even simple decisions such as what apartment we might live in! While we were always convinced in carrying to term, I can't even imagine the confusion of parents who didn't share our convictions and there asked to make a decision immediately after the diagnosis. I believe many of them, if "forced" to wait a month before terminating, would then change their mind because they would be thinking more clearly.

I could go on and on here...and maybe I will in another post on another day.

Right Said Red said...

One more thing...I think it might be hard for some of our readers to comment on this topic because Kat and I have had such intense experiences. Kat that doesn't mean everyone didn't really appreciate this post...keep them coming!

Kat said...

Mary Alice, I totally understand your sentiments about the ultrasound...We thankfully did not have C with us for Lucy's 19/20 week ultrasound, and because of that experience, we will not take our older children to any of our future ultrasounds either. It's a shame because I think that it could be a neat experience for older children, but I think it's the best way for our family to do things.

Red, thanks for your comment :) I completely understand that many people don't know how to respond when something so personal is shared, so I'm happy just knowing that others will read this post and reflect on its meaning.