Wednesday, July 1, 2009

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!

19 comments:

  1. Brilliant post.
    I was 29 when I was told I'd never naturally conceive. Consequently, it was a bit of a shock when, 3 months later, I found myself already 12 weeks gone!! I then spent the rest of my pregnancy worrying about all the "bad things" I'd consumed during those 12 weeks!! Fortunately my son was born healthy (I'd just turned 30). We decided to try immediately for a second on the basis that THIS time the OB/GYN doctor might be correct! During my second pregnancy (I was 31), they asked if I wanted nuchal scanning "because of my age". I did not. Our daughter was also healthy.

    My sister-in-law, on the other hand, had a perfectly normal pregnancy; then, during labour, had a placental abruption, which nearly resulted in us losing both her and the baby. She had to undergo an emergency caesar which hadn't exactly been her Birth Plan of choice! Her son is now fine.

    My cousin, on another hand(!), had IVF where 2 embryos resulted in 3 babies. However, at 26 weeks pregnant, she went into labour brought on by an intra-uterine infection. Tragically, she lost one of the babies, and the other 2 spent months in a SCBU with all sorts of problems. They now run around like little hooligans!

    But I have to say, pregnancy is probably the bit where you are most in control and it's "safest", because lemme tell you, once they come out, if you didn't have grey hair before, you damn soon WILL have!! I absolutely concur with your statement above: ...but I can tell you from experience that you will worry a thousand times more once you are a mother...
    Oh yeah, pregnancy is a Sunday School picnic in comparison. I never once during my pregnancies discovered my heart at the back of my throat or the pit of my stomach; but these past 9 years... oh man, I don't think my heart actually lives behind my sternum any more!! I think my veins and arteries are now made of bungee cord, but mostly, I wouldn't change that at all! Parenthood is one hell of a ride.

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  2. I really appreciated this post. Thank you for providing a sane perspective.

    One of our attendings told us about the doctor-couple who had planned on doing aid work in Africa -- until their 2 month old daughter developed biliary atresia.

    Things change, and you never know what hand life will deal you. Sometimes you just have to roll with the punches.

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  3. Thanks for this post. Wonderful perspective.

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  4. Very nice! I may borrow your statistical references when speaking with my AMA moms. Statistics also show that most Down's Syndrome babies are born to mothers under 35 (because more babies overall are born to younger moms.)

    It is amazing how many come to me at 35 thinking that they should no longer get pregnant..."because of the risk." (Most of my patients think they are "too old" to have kids once they hit 25!!)

    You are right, the risks don't stop there. If you did do anything that entailed risk, you'd never do anything at all. :)

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  5. thank you for this thought provoking post. maybe the best one I've seen (ever) concerning this topic. I'll be hanging on to it. As a fourth year medical student in a dual physician marriage, it is uncertain when we will be trying for our first. I'm 26. I have definitely encountered the rush-to-pregnancy frenzy at school and among college friends and sometimes feel like I have to "beat the clock" even though the time is not right for us. thanks for the perspective.
    good luck to you!

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  6. Excellent post. I didn't know that the odds of having a healthy baby were so high! Like the person who commented earlier, I did not know I was pregnant for the first 4 months so I ate tons of sushi and turkey sandwiches, had lots of Frappucinos and did not take my prenatal vitamins. People around me were actually surprised that my twins were born healthy despite all of my risky behavior.

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  7. Thanks so much for posting this.

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  8. As an OB/Gyn Resident, I have seen so many things that can go wrong during pregnancy! Terrible, terrible things. We are considering a pregnancy in the next year or so. I told my husband the other day. "Having kids is taking a risk. Something terrible might happen either during pregnancy or during the child's life. However, taking the risk also means that something wonderful might happen." You have to live your life like something wonderful might happen instead of the opposite. -OB Resident

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  9. Wow- thankyou so much for this! I love looking at the "chance of a healthy baby" rather than the other way around.
    I found out 2 days ago that I am (intentionally) pregnant with number 4- I will be 36 when this one is born, I basically made the decision to live in hope rather than fear (though there's plenty of fear- geriatric pregnancy and a 4th caesarean, plus family hitory of twins!!). My other 3 are similar ages to yours- 5, 3.5 and 2. I still don;t know what will happen after this one is born. Even if it is healthy, I think that this may be the child that makes me stop and take a few years out of medicine.
    Good luck deciding on number 4. I especially like how you can see the benefit of number 4 to siblings in the years to comne when you and your husband have gone.
    Rebecca

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  10. Great point about the chances of a healthy baby. My husband and I did that same math when one of our 1st trimester screening tests came back slightly abnormal - I think a 1:150 chance of something bad (I've blocked out the details!). We were really freaked, until we realized that we had a >99% of that bad thing NOT happening.

    I will also want to chime in, however, on the point that bad things can happen at any point. I had a great pregnancy (barring the brief scare above) and ended up delivering a very sick boy. It was a total shock that he didn't breath once born - and ended up on the vent for over 9 weeks. Miraculously (as a doctor, I don't generally believe in miracles - but when it comes to my own children, I do) he is now perfectly fine at 14 months.

    One more point: though I agree that the risk of Down's isn't a great reason to rush into pregnancy, the risk of infertility is worth considering. Had I known how hard it would be to get pregnant, I don't know that I would have changed the course of my life... but I'm not sure about that. If I'd ended up not being able to have children at all, I probably would have wished that I'd rethought it all at 30.

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  11. I LOVE your second set of statistics. It's an excellent example of how you can manipulate numbers to look either positive or negative. In my opinion, it's a personal decision between you and your hubby and no one has the right to tell you whether you should or shouldn't have another baby. Statistics about birth defects be darned - if it feels right, then go for it.

    For what it's worth, I'm one of 12 children. My mother had two miscarriages, one twin pregnancy. All of the living babies are 100% healthy, and her last baby was born when she was 44 years old. Of course pregnancy is harder as you get older. Of course there are greater risks for birth defects. But if it's right, it's right.

    I'm a mommy of a Potter's Syndrome angel baby (our third), and while I was terrified to get pregnant again with our fourth, it was the right thing to do. And our lives would just not be the same with out our rainbow baby Katie. I cannot imagine it any other way.

    Deciding to have a baby is gut wrenching, soul searing, and amazing. Good luck with your decision.

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  12. Now this was a sunshine article indeed. I, too, a second year med student, will imitate the med student who made a comment above and keep this article. Michelle

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  13. Oh my - I have just discovered this blog and i am in awe of your life as it is!! Wow - I wish I had your orgnaisation/energy/intelligence!! I have 4 kids - if you can do 3 - and you're an MD - honey - 4 will be another amazing adventure in the incredible life you have created fo yourself and your family!

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  14. I have a daughter who has Down syndrome. She was born when I was 33. And she rocks.

    The thing about the odds, is that it does not matter if you are the 1. It can be 1 in 1,000,000,000,000,000,000 and if you're the 1? You're the 1.

    That said, Down syndrome is nowhere near as bad as I had feared. Times have changed, special education has changed, her life is going to be very different than it would have been even ten or twenty years ago. It's certainly not something I'd choose, but it's not the end of the world either. Not by a long shot.

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  15. I am the mother of a beautiful daughter with Down syndrome. I was 29 when she was delivered vbac, following a perfect pregnancy. The fact that she had an extra 21st chromosome was not detected during screening tests or three ultrasounds, so I do not know what it is like to receive a pre-natal diagnosis. I do know however what it is like to be given this gift. Sarah will soon be celebrating her 20th birthday. Her life has been nothing short of miraculous. I just don't get what all the fuss is about with Down syndrome. I honestly don't. Come on over to her blog and check out just a few of her amazing accomplishments. You might just be surprised.

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  16. Thanks for reading and thanks to all for the interesting comments. I think the message I take away from this is that motherhood, with all its uncertainties and variations, is a fantastic, challenging, heartbreaking, and very worthwhile journey. Best of luck to all!

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  17. The question at the top of this post (Anonymous) "How well would your life work with a 4th child who has Down syndrome?" speaks directly to the primary issue here: we can't predict how the addition of any child will impact our lives.

    It is a chance we take when we decide to have children.

    Having five children myself (the youngest with Ds), I can say that our lives were impacted by the addition of each child. In a really good way.

    You can choose to worry about everything, second-guess every decision you make, compare your life to the lives of others. Or, you can choose to embrace your own life, whatever choices you make and whatever comes to you by chance. You can make the choice to be grateful, and hopeful, and to live a life filled with love.

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  18. I was 37 pregnant with my third child. I had a previous miscarriage due to a chromosomal abnormality, and two healthy children. There was over a 99% chance that I would have a baby without a chromosomal abnormality.

    Even though my doctors thought there was no reason I shouldn't get pregnant again, I was a prime candidate for an amniocentesis.

    I didn't want to have it for fear of miscarriage, but I respected the wishes of my husband and advice my doctor and had it. Just so we could be prepared if something was wrong. 3 weeks later, I was told my baby had died in utero. The doctors attributed the loss to the amnio.

    I went on to have another child, my sweet boy, who just happens to have Down syndrome.

    Let me tell you something ladies, if you are the one, you are the one. Let me tell you something else, losing a baby possibly due to an amnio is a whole lot more painful than LOVING a child who just happens to have an extra chromosome.

    Women and doctors really look at prenatal testing as no big deal, but it can be.

    Ask yourself, if you want another child, are you willing to love your child no matter what or are you only willing to accept a child who fits a specific mold? Then ask yourself, are you willing to terminate a pregnancy if a prenatal test shows that you were not given the child you wanted?

    What would you do if you turn out to be the one?

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