“Our results are in! We are having a healthy baby boy who is very low risk for any chromosomal abnormalities. Merry Christmas!”
The woman who posted this in my “Advanced Maternal Age” online support group had every right to be thrilled. After all, who wants to find out that their child will have disabilities? When you are over 35 (or, in my case, over 40), most insurance companies cover the costs of extra testing for chromosomal abnormalities, as the risk of these conditions increases with maternal age.
Day after day, I celebrate with my peers when they get the good news. I, too, had the testing done, and was relieved to hear that the chances were good on at least one diagnostic front that the new baby…well, that he wouldn’t be like Charlie.
Indeed, my first conversation with the high-risk OB was incredibly surreal from the perspective of a mother already raising a child with what many in the medical world have described as having a “catastrophic” medical condition. Jim and I sat across from the knowledgeable doctor, smiling and nodding as he reviewed flip charts about eggs and chromosomes and how age impacts our risk factors for abnormalities, and then outlined the types of testing that I could have and how early in the pregnancy that I could have it done.
I explained to the OB about Charlie, how all of the tests to determine the cause of his condition have been inconclusive, and that he is likely to function like a baby for the rest of his life. I told him that I was told that it was probably a fluke that he is like this, but that the reality is, we just don’t know. I shared that because of this unknown factor, I am a bit more anxious than the typical expectant mother, but as a woman of science, I find comfort in the lack of evidence that lightening will strike twice.
For the first time in his 20-minute canned speech, he stopped what he was doing and looked right at me. A softness came over his face and I could tell that he was trying his very best to be present with me. I imagined that he was thinking, “This one is not routine. I need to connect with this woman.”
I was offered a routine blood screening test that can detect common chromosomal abnormalities. If this test was positive, I would still need a confirmatory diagnostic test, which would probably be amniocentesis. The doctor explained that amniocentesis carried with it a small risk of miscarriage.
I have a background in reproductive epidemiology, so I already know a little about these things. I know that some common comorbidities associated with chromosomal abnormalities such as cardiac defects are sometimes detectable on high-quality ultrasounds during pregnancy. The detection can allow families to line up their medical team, and establish strong family and community support before the baby is even born. I know this because many children with Charlie’s condition, unlike Charlie, have detectable prenatal abnormalities, and I routinely discuss these issues with them.
I asked the doctor what would happen if the blood test was positive and I chose not to get the amniocentesis, for fear of the miscarriage risk. “Would we just assume that the baby has an abnormality and proceed with good ultrasounds, keeping a closer eye on the baby even if I don’t have amnio?”
For the second time, he looked up. He tripped over his words.
“Are you telling me that you would not terminate the pregnancy if you test positive?”
I hadn’t really thought of it in those terms, but I answered him with a question:
“From what I described to you about my son…it’s my understanding that kids with the conditions screened for in this test, specifically Trisomy 21…that, of course, there is a spectrum of outcomes, but that many of those kids can have really great lives…walking and talking and holding jobs and falling in love….outcomes that seem to me to be much better as far as functional level goes than what Charlie has. Am I correct about that?”
“Yes, that’s an accurate assessment.”
“Well then…I mean, Charlie is my sunshine. He’s my whole world. He has many limitations but he’s just delightful….I don’t feel afraid to have another baby with special needs. So, no…I guess my answer is no, I wouldn’t terminate if the test was positive.”
My position on this was a revelation to everyone present. I am vocally pro-choice. I don’t think that any woman should be compelled to have a baby, and for this reason, I am very glad for these tests. But, for me, I have faced many pregnant women’s worst fear: that something is wrong with the baby. And I have the wisdom, the hindsight to know, that, for me personally, my life with Charlie is beautiful, six years after receiving Charlie’s fateful diagnosis. There is nothing nightmarish about Charlie, although dealing with the school district and the insurance companies, THAT’S a NIGHTMARE. But I digress.
Of course, we have absolutely no way to detect spontaneous genetic mutations or other conditions not included in these screening tests. We had no idea when Charlie was born that he would be the way that he is. We thought Charlie was “normal” at birth, except for his prematurity.
We all roll the dice when we get pregnant, don’t we?
For me, this pregnancy experience has become a philosophical exercise of sorts, an unexpected critique of the pop culture phenomenon that pregnancy has become, the perceived entitlement not only to have a baby, but a HEALTHY pregnancy and HEALTHY baby and all of the activities surrounding the celebration of such entitlement. Of course, I and the thousands of other parents of children with special needs with whom I regularly interact will tell you that there is no such entitlement.
I see these entitlements everywhere in the culture that surrounds pregnancy:
gender reveal parties
maternity photo shoots in the age of Pinterest
Let’s be clear: this is not an indictment of these practices, and indeed, I think it is lovely for pregnancy to be celebrated and elevated by our culture, for women to attempt to own and control their childbirth experience to every extent possible, avoiding unnecessary interventions and rejecting cultural practices that have no basis in science.
I love the idea of the ultrasound tech placing the top-secret results into an envelope, which is then given to a bakery, which then bakes the cake with blue or pink inside, and everyone finds out the baby’s sex at a big party when the cake is cut. That’s AWESOME.
I only mean to point out how these practices can serve as painful reminders to those of us who are white knuckling it through complicated pregnancies, or are simply superstitious that any normal expression of joy will jinx it somehow, as something bad always seems to happen to our babies. It also puts into context the crushing disappointment, the overwhelming feelings of unfairness and being unprepared for sadness that is experienced by parents upon their child’s diagnosis. The world tells us that everything about having a baby is supposed to be fun.
I was so focused on the ultrasound tech showing me that the baby’s brain was present in both hemispheres that I hadn’t considered entitlement to anything beyond that, let alone fantasizing about cutting the mysterious cake in front of a roomful of well-wishers.
Instead of a babymoon, we will be taking Charlie’s Make-a-Wish trip to a resort designed specifically for families of children with life-threatening diseases.
While others are planning fun activities for big siblings to participate in during mom’s hospital stay, our plan focuses heavily on training friends and relatives on how to administer Charlie’s dozen + pills per day, where to find his diapers, and reminders to keep the gates locked so he doesn’t wander off in the middle of the night.
Do you see what I mean?
Today, at the OB’s office, the nurse administered my weekly shot of progesterone that helps prevent me from going into preterm labor. When she was finished, I absentmindedly sang, “Allll done! (as my son would say).”
“Oh, how old is your son?” the nurse asked, innocently.
I realized, sheesh, I must sound like a toddler’s mom, not the mother of an almost seven-year-old whose speech is just starting to emerge.
“Oh, he’s almost seven, and he’s special, so that’s why we are being so careful this time…” I stumbled over my words.
And here she thought injecting a chatty 41-year-old in her butt was going to be the most awkward part of her day.
But so it goes when you are pregnant, and one of your other children has special needs.