Words and Their Meaning
On titles, relationships, misunderstandings, slurs.
I want to talk about my daughter. Or one of them. I was going to have two daughters, one in 2021 and another in 2023. I saw them both on the sonogram monitor screens. They had passed all the usual early tests and time frames. Statistically, they should have been okay. They should have been safe, and seeing them there, these little curled beings floating in the darkness of space, in that secret dark ocean we all inhabit before life begins, they became real to me. Not just hypothetical, but actual, specific, individual, loved. Tiny cosmonauts, recognizably human, attached by a lifeline to their mothership, to me.
Nothing went wrong, exactly. The pregnancies were strong and healthy. But the human genome is complex, and we’re supposed to have a certain number of petals that make up the flowers that we are. No more, and no less. I have talked about this before. There are supposed to be forty-six petals on our flower, twenty three sets of two in all. Of course I’m talking about chromosomes, and when someone has an extra one, things can get complicated.
These extra petals are called “trisomies,” and having a trisomy can make your biological gender ambiguous, or it can make you shorter than you might have been otherwise, or it can make your muscles weaker, or your speech more difficult, or cause you to take a little longer to learn certain things or reach certain milestones. You might look a little different, or experience problems with some of your organs, or have a shortened lifespan.
Most of the time, that extra petal is dangerous. Fatal. The term I’ve seen is “embryonically lethal.” These additions, these variations implemented at random by the ever-inventive and experimental Mother Nature, at the time of conception, are not compatible with life. However, a few of these extra petals are compatible with life, or they are sometimes, and individuals with these trisomies can be born and live for anywhere from a few hours to many decades.
The best known of these is trisomy 21, usually called Down’s syndrome. This is the one most people have heard about, and if you’re going to have a trisomy, this is the one you want1. You’ll have some challenges, certainly, and your features will look a certain way that is identifiable to the casual observer, but otherwise you’re not really that different from anybody else.
Unfortunately, there is a lot of misinformation out there about this condition. You can still grow up, have hobbies, be an athlete, be an artist, go to college, get a job, have a romantic relationship, get married, love and be loved, and do most of the other things that people without this trisomy can do. Now that medical understanding of the condition has improved, your lifespan with Down’s syndrome has the potential to be the same as anyone else’s. Elizabeth Eastley, who was born with Down’s in 1945, just turned eighty years old this past November.2
Other trisomies are not so lucky. While a few are survivable, the prognosis is generally less favorable, with a higher incidence of “fetal demise,” and a considerably shorter lifespan when a full term birth is reached. Even Down’s syndrome is often lethal prior to birth, with up to 80 percent of all incidences ending in miscarriage at or before a mean gestational age of about 30 weeks3. But if things are working well enough with trisomy 21 for a baby to be born, most of the time, they’ll be more or less okay.
So, my daughter. The one I had wanted to talk about. She had one of these trisomies that is sometimes survivable, but in her case, was not. We didn’t do any genetic tests prior to her death, and only learned about her trisomy after the fact. She is buried in a cemetery in Paris, and this week I had to go to the mairie of the arrondissement where she was delivered, to request copies of her acte de décès, her death certificate, in which she is recorded as an enfant sans vie. It has been almost five years, and her plot in the cemetery must be renewed, and to do this her father and I must prove our succession rights.
