I’ve written much of the following in various posts on my blog before, but I wanted to sort of compile it, as I’m hosting my book club’s discussion of The Unfinished Child at my house tomorrow night, and the central questions posed by the story are: has maternal technology made things easier for parents? And, is it always better to know a baby’s condition prior to its birth, or for that matter, is it better to know what the future may hold for us? While I don’t believe there is a right or wrong answer to these questions, I have certain feelings about these issues based on my own experiences.
I was 40 when I found out I was pregnant with my sixth baby. It was not a planned pregnancy, but we embraced it, and planned for what would be our second home birth. Despite my “advanced” age, I declined all prenatal testing that would have picked up a genetic anomaly; home birth is by its very nature very low-tech and low intervention, and in all honesty, I just couldn’t imagine that I wouldn’t have a healthy, typical baby like all the rest of the babies I had had. With my previous pregnancies, I did undergo some of the routine prenatal screenings, although never anything definitively diagnostic like amnio or CVS. Looking back, I realize that each time I did submit to prenatal screenings, I did it, for the most part, under the assumption that everything would come out okay – normal. I don’t remember ever really suffering through much anxiety over the test results. I just did the screenings without a whole lot of thought, because that’s just what you do, right? I don’t think I ever gave much thought to what I would do if any of the screenings came back showing something unexpected. I just don’t think it really occurred to me that anything like that would happen to me – I couldn’t envision it.
So when I was pregnant with my sixth baby, I declined all prenatal screenings, with the exception of a mid-pregnancy ultrasound. I was dying to know the baby’s gender, and I figured if there were any serious anomalies that would preclude a safe home birth, they would show up on the ultrasound. The ultrasound showed a perfectly-developing baby boy, and we were thrilled – the score would be evened: three girls and three boys.
During my last trimester, I began to retain A LOT of amniotic fluid. I developed polyhydramnios. By the end of my pregnancy, I was as big with one baby as I had been full-term with my twins. My midwife and I knew that polyhydramnios could be an indication of an abnormality, but neither of us were overly concerned. After all, I had had the ultrasound which didn’t turn up anything irregular. She kept a close watch on me and the baby, and we were both doing fine.
I went into labor at right around 38 weeks. When my water broke, the amount of fluid that gushed and gushed was unbelievable. Finn was born in the wee hours of the morning on July 7, 2008. The birth itself went just fine, though the whole thing took quite a physical toll on me. The quick loss of so much fluid kind of put my body into shock, and I could barely stand up without help after Finn was born.
We were very surprised with how big I had gotten to see this tiny 6 pound baby emerge. I was so exhausted by the birth that I don’t think I was completely lucid or able to focus on details. I was surprised by Finn’s small size, but noticed nothing troubling about him. Michael was concerned about how the baby’s abdomen looked – it appeared distended. I couldn’t see what he was talking about. I just needed to rest. Our midwife stayed for a couple of hours after the birth and then went home. Later I learned that she did not go home to sleep, but to pull out her textbooks and do research. Something about the baby didn’t seem quite right, but she didn’t want to alarm us, and nothing seemed life-threatening, so she went home to gather information before bringing anything to our attention.
I slept. The baby slept. I woke every so often and tried to nurse him, but couldn’t get him to latch on. I was too exhausted to be concerned. I knew that babies are born with a reserve of fat and that they could actually go a day or so without feeding after birth and be fine. Besides, I remembered that it took some time for some of my other babies to become alert enough after being born to nurse. Finn didn’t pee or poop either during those first several hours. I wasn’t concerned. I was too tired, and my whole body hurt. I felt like I had been run over.
My midwife came back early in the afternoon of July 7 to check on me and the baby. While she was there, Finn opened his eyes for what seemed like the first time. I will never forget that moment. He gazed at me, and I saw it in his face then . . . It was fleeting, and I pushed the thought away. No, it can’t be, I told myself. I didn’t say anything. I noticed that Sue, my midwife, was doing an extremely thorough exam of the baby – way more thorough, it seemed, than she had done of Lilah when she was born. Still, I refused, or was unable, to register that something might be amiss. Then she showed me the palms of his tiny hands, how they each had a single line crossing them (which I had never seen or even heard of before), and she gently said, “You might want to bring this to your pediatrician’s attention when you take Finn in.” “Why?” I asked. “Because,” she said, “it can sometimes indicate certain genetic anomalies.” I went cold then. “Like what?” I asked. But I knew what she was going to say even before she said it. “Down syndrome.”
Things got crazy shortly thereafter. Finn was by then about 12 hours old and still had not nursed, nor peed or pooped. Suddenly he started spitting up blood, and that was really the beginning of the rug being pulled out from under us. Leaving our midwife with our other kids, Michael and I had to rush our newborn to the ER where over the next several hours he would be hooked up to an IV, have a tube fed into his stomach to flush it repeatedly, and undergo a number of exams and tests which would eventually show that he had a duodenal atresia, which explained my polyhydramnios, and also explained why he wasn’t peeing or pooping. He was admitted to the NICU, and we went home that night with empty arms. The next morning, at one day old, Finn underwent major abdominal surgery to correct the duodenal atresia. Relatively speaking, in the gamut of abnormalities and surgeries, this was straightforward, but it was, of course, devastating to us to have to leave our baby and to see him struggle to recuperate from the surgery. He spent 12 days in the NICU, and it was during that time that we received confirmation via a blood draw that he did, in fact, have Down syndrome.
Sometimes I wonder, looking back, if the news of his Down syndrome might not have been quite so crushing had we not also been dealing with his having to have surgery and to be in the hospital instead of at home with us. It all seemed to compound it.
Despite the fact that it was a very difficult time, I’ve never regretted not knowing before he was born that he has Down syndrome. It seemed to me Finn himself was the first one to tell me, when he opened his eyes and I saw it in his face for that brief moment. I wasn’t ready to accept it then, but there it was. I actually hold that moment as very precious now; I can’t imagine a better way to have been told.
We believed that Finn was our last baby, but I found myself very unexpectedly pregnant again at the ripe old age of 44. I was scared – it didn’t seem to me that at that age it could end well. More than anything, I was afraid I would miscarry, but feelings of doom and gloom lifted with the passing of my first trimester. I settled into being pregnant again, and there was never any question that we would plan for another home birth. I think a lot of people were surprised and incredulous when I revealed that I would not undergo any prenatal testing, with the exception of an ultrasound. I’m pretty sure that at least some people thought we were being stupid and reckless – a home birth, and no prenatal screening at my age? And after already having given birth to a baby with Down syndrome!
Only, I didn’t see it that way. It’s not that I was choosing the bliss of ignorance, necessarily, but how I chose to approach this pregnancy had very much to do with my feelings about Finn – about his birth, his diagnosis and how that was delivered to us, and his very personhood. Was I truly okay with it? I did not feel that knowing this baby’s chromosomal makeup before she was born would benefit her or me – I was only concerned that she was physically healthy enough to be born safely at home. My midwife supported my choice not to have any prenatal screenings beyond a 20-week ultrasound, but I think even she worried about the odds of my baby having a genetic anomaly based on my advanced age and the fact that I’d already had a baby with Down syndrome.
Scarlett was born at home a day past her due date on a warm summer evening. I had a wonderful, easy pregnancy with her, and her birth was probably the best of all my births. After she slipped out into the world, and I pulled her up and held her in my arms, I remember my midwife taking one of her tiny hands and spreading her fingers out, examining her palm and showing it to me. “See?” she said, showing me the typical double crease. “I don’t care, I don’t care,” I said. “I just care that I have my baby here.” I didn’t want those first few precious moments spent worrying or feeling relieved about her chromosomal makeup. I wanted to just know her as my baby – not my healthy baby, or my defective baby – just my baby. Exactly how my first moments and hours with Finn were spent.
I understand that for some people, knowing as much as possible in advance is helpful. For me, there was a beauty in not knowing. With all the hindsight and experiences I have behind me, my feeling is that maternal technology has a way of oversimplifying things and complicating things at the same time. I think that prenatal tests tend to give either a false sense of security or a false sense of doom. They reveal such a small part of the picture. Prenatal tests can’t tell us what our children will be able to do; they can’t tell us what challenges we will face or avoid; they can’t tell us how much we will love our children, or how much our children will enrich our lives in ways we never imagined. They can’t tell us what those lives will really look like, or how little control we really have over our lives or our children’s lives.