Someone very close to me recently learned that the child she is carrying has a condition called trisomy 13, otherwise known as Patau syndrome. It’s a chromosomal disorder that results in severe developmental defects, and isn’t as rare as you might think. Most people probably haven’t heard of it (unlike trisomy 21, otherwise known as Down syndrome) because babies with Patau syndrome seldom live out a single day; only one in ten survives a month. You’re unlikely ever to see one of these children.
Most people (including her doctor) are urging the mother to get an abortion, although she is in her fifth month of pregnancy. Even as a staunchly pro-choice person, I find the thought of a late second-trimester abortion troubling, and my heart aches for the mother and the baby both. In this situation, I honestly cannot decide what would be the right thing to do, were it my child. It is almost impossible to imagine what the mother and her family are facing.
After a few days of obsessive web research, I have learned enough to make the moral picture even more blurry. The genetic material of a fetus with trisomy 13 is all mixed up, and it gives the body contradictory messages that complicate growth. In many cases, the lobes of the baby’s brain fail to separate, and that causes facial abnormalities as well as mental retardation. What kinds of abnormalities? Well, the baby can develop eyes too close together, or eyes that are only partially formed, or no eyes at all. (Virtually all children with full trisomy 13 are blind.) The same is true for the ears and nose, and most Patau babies lack these senses, as well. A cleft or double-cleft palate is common. One characteristic that helps doctors identify Patau on prenatal scans is polydactyly (too many fingers and/or toes). The most severe problem, at least from a surgical point of view, is that most fetuses with trisomy 13 have heart defects that are difficult (sometimes impossible) to correct. In this particular case, the baby’s heart has only three chambers instead of the usual four.
Clearly, when a woman conceives, or even thinks about conceiving, the possibility of having such a child is something for which she tries to mentally prepare, all the while hoping fervently, even desperately, to have a “normal” baby, one that will enjoy a long and healthy life. And yet, those same impulses arouse fierce protectiveness and empathy for the “sick” baby. Many children born with severe health problems can be saved; we’ve all seen the TV shows with incubators and infant ICUs and stories of precious miracles. When a woman gives birth to a Patau baby, she is more likely to be allowed to hold it, rock it, love it, possibly name it, and expect it to die in her arms.
So if you knew you were carrying this baby, what would you do? For most of us, hazy ideas about religion and the soul and “quality of life”—not to mention a sort of primal fear—offer a gut response. But the longer I think about this, the more complex it gets. You have life-or-death power over the most tragic and helpless of creatures. What is the most compassionate response?
That’s a terrible, terrible situation to contemplate… as an adult, my only fears are for my children; I am also pro-choice, and have the same reservations you stated.
The most compassionate response is difficult to articulate. I can only say what I would hope for, if it were my wife, carrying that child, with that condition.
The child will die. That is all but certain. But to carry it through to birth, and the possibilty of holding that child for a minute, or an hour, or a day…
That’s a lifetime. I would want to touch, and speak to, and love, that child for however long the lifetime may be.
Thanks for your thoughtful response, James. It frustrates me that there’s no clear-cut answer, but I really understand your views as a parent.
It’s an impossible dilemna. I think of the Gwendolyn Brooks poem on abortion:
“oh, what shall I say, how is the truth to be said?/ You were born, you had body, you died./ It is just that you never giggled or planned or cried./ Believe me, I loved you all./ Believe me, I knew you, though faintly, and I loved, I loved you/ All.”
This is indeed a heart-rending situation. But, not really knowing the specifics of the situation and thus not wanting to imply anything for this particular case, Literacy, I do have a pretty definite view on the right and wrong here, which I’ll try to articulate without putting my foot in my mouth too badly.
It seems clear that this child, if born, would live a very brief, pain-filled life that is almost completely lacking in the opportunities, experiences, and relationships that make human existence worthwhile. All things being equal, it seems cruel to bring such a child into the world. Abortion is the moral choice, because it shows the most compassion for the fetus.
I agree that the situation is complicated by the lateness of the pregnancy. That brings in at least two more factors. First is the possibility that the fetus would feel pain during the procedure; it’s clear that fetuses in their early stages don’t even have the capacity to feel pain, but I don’t know about a fetus that’s 5 months along. The second is the health of the mother. I understand that later abortions are riskier, although I don’t know whether they’re riskier than childbirth itself. (I’d guess not.)
Another factor is the attachment the mother (and possibly father, and other family members) have formed with the child-to-be. And this is what makes the situation most heartbreaking: Doing the best thing for the child — keeping it from a short and nasty life — could be just the thing the mother is least emotionally prepared to do. For that reason, I wouldn’t dare condemn whatever decision a mother might make in such a situation.
I hope your loved one can find the strength and consolation she needs.
Dave and all,
I am a new grandmother of a baby boy born with Full Trisomy 13. The positive diagnosis came 3 days after his birth although there were plenty of indications right after birth. Doctors have to confirm with karyotyping to measure whether it is Full Trisomy 13, Partial, a Translocation of chromosome 13 or mosaicism. Much of their prognosis determines by the type and severity of the case. My grandson has been the exception to the rule. He was born full term at 9 pounds 3 ounces. His heart has always been strong and ultrasounds did not pick up anything more than the possibility of Cleft Lip and possible Cleft Palate.
Now, I do know of a case where a woman in England had gotten an order from the court allowing her to have an abortion at 28 weeks because her baby had cleft lip. I thought, how terribly shallow and vain a woman that would abort a viable human being because it wasn’t the Gerber Baby. Even though there are statistics that stack up against children born with Trisomy 13, there are survivors! Go to http://www.livingwithtrisomy13.org/index.htm and see all the survivors!
Who are we to judge the quality of another’s life? Hey, I feel real sorry for people that have to live in a shack in some third world country with disease, lack of health care and poverty beyond belief. To me the quality of their lives must be really rough. My grandson is loved, pampered, and well cared for and I cherish every moment of every day that I have him. And that would not have been possible had my daughter made a choice to abort her baby because he wasn’t the Gerber Baby.
Thanks again for those of you who have extended kind wishes toward the mother and her family. For them, it is indeed not only a question of physical well-being; it is psychological, as well. I initially posed the situation as a type of moral abstraction, when of course it is anything but.
I do wish to emphasize that there is a huge distinction between full Trisomy 13, translocated/mosaic Trisomy 13, and a “Gerber baby.” The latter two have good chances for survival; the former does not. It is precisely the semantic difficulty over what constitutes a ‘viable human being” that is at stake here. All I can say in response to Dori is that I am happy she has her grandson, and that her family did not have to make these kinds of choices.
Dear LHD,
My heart went out to the mother who has to make a life decision like this. I am a mother to a Patau baby. She survive the gestation period and live up to 5 months 18 days. She left us on 8th of June 2006. The doctors had indicated the problems to me during my 5 months of pregnancy, and they suspect that the worst the baby can have is Edward Syndrome (Trisomy 18). However, she comes out having a Trisomy 13, which is worst than Edward, altough Edward baby might not live long as well, medical facts and histories say that the condition of Patau baby is more severe. I didn’t do an amnio during my pregnancy because it is against doctor recommendation.
She has the complete features and conditions of a Patau baby, except for her heart which is normal and quite strong. She is such a strong little fighter and it is such a bless to have her with me although for a while. She gave me the new meaning of life and her legacy stays with me for the rest of my life.
Do write to me if the mother needs someone to ask to about this special baby.
Hugs.
Lara G.
b. November 10, 2006
d. November 10, 2006
R.I.P.
Very sad, just looking at those dates.
How’s your friend?
Thanks for your concern, Lisa.
As for the mother, we just got off the phone. She’s showing amazing equanimity and seems to be at peace. It’s hard to imagine being that strong.
Good for her. And you’re a good friend.
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