Ladies, don't panic!

Just a couple days ago, I posted about the decision my husband and I are struggling with about whether to try to have a fourth child. The piece got a lot of comments. The one that struck a chord the most, though, came from an anonymous reader who commented:

"At the risk of being the Cassandra here, how well would your life work with a fourth child who has Down's?? You know how high the odds are climbing for you at age 37. Your family size is clearly not my decision, but in my family of origin I was the youngest by a large margin, and my parents wanted a sibling "for me" close in age. My un-named baby sister had Downs and its most severe cardiac manifestation when she was born via emergency C/S to my then-37 year old Mother. She never left the hospital, and her death tormented my Mother the rest of her life. And selfishly, I know if she had lived MY life would not have been the same. Just some food for thought...."

First, let me say that I think Anonymous' intentions were good, and I appreciated the willingness to share a personal story to provide the devil's advocate viewpoint to the general tone of "Keep the love goin'" comments I was hearing. But the truth is that that comment struck fear in my heart. I immediately thought "She (or he?) is right! We have been so fortunate to have 3 healthy kids. We should quit now." And then, "Actually, no, I don't know 'how high the odds are climbing' for me at 37." I know that 37 is advanced maternal age, but I had no idea what 37 really meant for my risk in cold, hard data. So I did what I always do in moments of personal medical crisis--I did research and I called my baby sister (not an MD, but a pediatric physical therapist and a voice of reason).

From a career standpoint, I wear two hats--one as a clinician treating breast cancer patients and one working in a public health role. For both, I spend a lot of time thinking about risks and how we convey them to patients and people in general. What is most understandable by a lay person? How do we shape perception of risk, and in turn behavior, when we express risks one way versus another? It is fascinating and, at times, disturbing.

Note that, due to some formatting challenges for my elderly brain at 12:30am, I am indicating risk of Trisomy 21 in bold and risk of any chromosomal abnormality in italics rather than figuring out why my tables come out garbled in the post.

Maternal age Risk of Trisomy 21 Risk of any chromosomal abnormality

25 1 in 1250 1 in 476
30 1 in 952 1 in 384
33 1 in 625 1 in 286
35 1 in 385 1 in 192
37 1 in 227 1 in 127
40 1 in 106 1 in 66

For any of you who aren't 25, I am guessing this looks pretty scary. I know I can feel the sand slipping (or more accurately, gushing) out of my hourglass when I look at that table. But now what if I put it like this instead? (Same formatting convention with the bold and italics, but note the difference in the headings)

Maternal age Chance of NO Trisomy 21 Chance of NO chromosomal abnormality
25 99.92% 99.78%
30 99.90% 99.74%
33 99.84% 99.65%
35 99.74% 99.48%
37 99.56% 99.21%
40 99.06% 98.48%

Kind of takes the zing out of it, doesn't it? For those who don't know, 35 is called Advanced Maternal Age because that was the age (historically...amniocentesis is a bit safer now than it used to be) at which the risk of fetal loss due to amniocentesis was approximately equal to the risk of detecting a chromosomal abnormality, and therefore, the benefit of prenatal detection was felt to justify the inherent risk of the procedure. The fact is that, at the large academic medical center where I practice, they now consider advanced maternal age, for those purposes, to be 32 and routinely offer amnio to women who are 31 or older at the time of conception. This has caused all sorts of angst and dismay amongst the female residents and fellows who feel that they are now somehow at higher risk because of this change in definition. One physician even lamented to me: "It's not fair. How come advanced maternal age changed to 32 for us? I thought I still had 4 years, and now I only have 1!?!" Ummm...because amnios are safer.

Now, don't misunderstand me. I am not on a soapbox to get everyone to delay childbearing willy-nilly into their 40s and 50s. That is the terrain of Hollywood stars. For every successful story you hear of someone who had all 3 of her kids in her 40s with her own eggs and got pregnant in a month each time (and those people exist, for sure), there are also many, many often untold stories of women who endured multiple miscarriages or fertility treatments, who tried to get pregnant unsuccessfully for years with all the heartbreak that involves, etc. But the fear of Down's syndrome, or any other chromosomal abnormality, should not be what drives someone to get pregnant (or not).

So, as I said, I also called my sister to get her take on all of this. Wise as always, she said something that really hit home for me. She has a clinic brimming with children who have physical and cognitive challenges of every variety, including Down's syndrome. But, far and away, the most common cause of the disabilities she sees are things that happened after birth: near-drownings, meningitis, head injuries from biking without a helmet, car accidents. Patients with Down's or other chromosomal abnormalitites represent a minority of her practice. Which brings me to my next point: there are no guarantees in life or in parenting. To be clear, I am all for prenatal testing. I think it is critically important for couples to have the opportunity to know before birth if their baby has a chromosomal abnormality, whether that allows them to make the agonizing choice to terminate a pregnancy or to prepare for how their lives will change with the addition of a special needs child. But it's not a guarantee of a "normal" child. There are plenty of things that can't be tested for prenatally, and there are plenty of things that can go wrong--both diseases and accidents--after birth that will change the life of a child...and his siblings...and his parents forever. One of my own best girlfriends from college is currently struggling to come to terms with how their lives have changed since her previously healthy and incredibly athletic 7 yo son had several catastrophic strokes for which no explanation has been found. That uncertainty comes with life and with parenting, and if such uncertainty is too much for an individual to bear, parenting is going to be a very long, very hard road.

Everyone always says that pregnancy prepares you for being a mother--the sleepless nights of back pain and leg cramps and inability to breathe and peeing and rearranging closets during pregnancy are training for waking every 2 hours to breastfeed ad infinitum, to comfort the colicky baby who cries half the night, etc. The truth is that the lost sleep of pregnancy is just the tip of the iceberg compared to the lost sleep with a newborn. Worry is no different. You will no doubt worry as a woman trying to conceive and as a pregnant woman, but I can tell you from experience that you will worry a thousand times more once you are a mother. It is understandable. It is probably evolutionarily conserved so that our species will survive. But it cannot be all that you do, or it will become all that you are.

So ladies, don't panic!