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Down Syndrome Awareness Month: Receiving the News

Posted Oct 05 2010 12:00am
October is Down Syndrome Awareness Month. Unfortunately, I couldn't commit to taking part in the 31 for 21 Blog Challenge this year (boo!), but there are a few topics near and dear to me that I would like to write about during this month.

A question that's been posed to me over and over since Finn was born is "Did you know he had Down syndrome before he was born?" The answer is no, I did not.

The next question is usually, "Didn't you have prenatal testing while you were pregnant with him?" And the answer to that is also no, I did not - with the exception of a mid-pregnancy ultrasound.

I've written about my experiences with regard to these questions in detail over the life of this blog, but for anyone who hasn't followed our story from the beginning, here it is in a nutshell
Finn is our sixth baby, and, ironically, the only pregnancy during which I did not undergo any prenatal screenings for genetic abnormalities. I say ironic because I did do the usual screenings with all of my other pregnancies. With Kevin, my first pregnancy, I was 29 years old, and at that point in my life I was a very passive patient who just went along with whatever the doctor ordered, no questions asked. So when the AFP blood panel was recommended as a routine screening at 15 weeks, I did it, without ever giving it too much thought. Same with my second pregnancy. By the time I was pregnant for the third time (with twins), I was 36 years old, and it was recommended that I undergo an amnio because of my "advanced maternal age." I declined, as I was unable to justify the risks in my own mind. I did, however, submit to a First Trimester Screening, which consists of a detailed ultrasound which specifically examines the nuchal folds on the fetus's neck (which can indicate a genetic anomaly) in conjunction with a specialized blood panel. When I was pregnant with my fifth baby at age 38, I again declined an amnio, but did undergo the First Trimester Screening again. Lilah was a planned home birth (I was, by then, a much less passive patient!). However, because of early pregnancy bleeding, I was under the care of both my midwife and an obstetrician for about the first half of my pregnancy.

When I look back now, I realize that each time I was pregnant and underwent prenatal genetic 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. Not that I felt I was special or anything, but . . . I guess on some level, I figured I had already had more than my share of unexpected and devastation elsewhere in my life - what were the odds of lightening striking yet again?

I was 40 years old when I got pregnant with Finn. By then I had completely washed my hands of conventional obstetrical care. Finn was going to be another planned home birth, like his sister Lilah was, only this time, no obstetrical involvement. I put myself completely in the care of my midwife. Even so, I could have undergone whatever prenatal screening I wanted, but I opted out of all the screenings except for a mid-pregnancy ultrasound, mostly because I was dying to know the baby's gender, and because I figured if there were any serious anomalies that would preclude a safe home birth, it 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 Finn 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 with Finn. When my water broke, the amount of fluid that gushed and gushed was unbelievable. He 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. All the excess fluid and the extent to which my uterus had been distended kind of put my body into shock, and I could barely stand up without help after Finn was born (it was the same after my twins were 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 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. I saw it in his face then, that he had Down syndrome. 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 his palms, 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 fairly straightforward and routine, 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.

Nonetheless, I really feel that his diagnosis was delivered to us in the most gentle and humane way possible. Really, 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. My midwife suspected almost immediately after he was born based on different observations she made, but she wanted to be sure before she said anything, and she wanted to give us time to bond with him and get to know him without a scary diagnosis standing in the way. I will forever be grateful to her for the way she handled it. And the doctors at the hospital were very kind when his diagnosis was confirmed. Not one of them ever painted a grim picture for us of Finn's future, and as I sat there hour after hour, day after day, crying and trying to come to terms with it all, it was the doctors and nurses who told me over and over, "Who knows what he'll be able to do? Just wait and see."

There's really nothing I'd change if I could. I don't at all regret not having prenatal testing - I'm glad I didn't know until after he was born. I had the luxury of just enjoying being pregnant and being excited about the coming arrival of another new baby. Had I known beforehand, I know myself well enough to know that I would have been scared and depressed - it would not have been the joyful experience it was. And knowing beforehand probably would have induced me to give birth at a hospital instead of at home, which I know I would have regretted.

I'm glad that Finn was born at home. Not that I'm advocating home birth (I'll save that for my other blog!), but for me, it was the best thing. Giving birth at home allowed me a measure of love and support I never had with any of my hospital births. Finn was born into loving hands, in surroundings comfortable and comforting to me, and we were given hours and hours to be with him and love him without a diagnosis getting in the way. It would have been a whole different story had he been born in the hospital. A number of people seem to think the whole thing might have been better, or safer, had he been born in the hospital. I am here to say that that is just not the case. Being born at home did not cause his Down syndrome, and wouldn't have changed the outcome of his duodenal atresia. Being born at home was the best thing for him and for us, and I'm extremely thankful.

And that's the way it unfolded for us.
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