Kate who was initially happy to be pregnant a second time, shares her devastating story with Yahoo parenting.
“My husband and I always wanted a big family. We wanted to have a lot of kids and to start young and have them close together. In 2010, we had our first. A healthy baby girl. But when we were ready for number two, getting pregnant — or, rather, staying pregnant — was harder. I had three miscarriages before a pregnancy finally stuck. I was expecting a second little girl in the summer of 2012, and everyone around me said everything looked great.
Well, almost everyone. At my 18-week fetal scan, a technician thought she saw something – she wasn’t sure what, exactly — so they sent me for a Level 2 ultrasound at a local teaching hospital. “Level 2” meant that it would be more detailed than the standard sonogram, and a maternal fetal medicine (MFM) specialist would look at it. When I went for that test, the MFM specialist said the baby was healthy. I was worried, but when I expressed my concern to the hospital’s genetic counselor, she said, “His job is on the line. He must be completely confident.”
That whole pregnancy was hard for me. I was sick for much longer than most people are. I had sleep apnea. When I was pregnant with my first daughter, she would kick responsively, and then she would take naps. It seemed logical. This baby never stopped moving, but she never did anything responsive, either. The movements were so random. I remember telling a friend, “This baby is already different than my first.” I don’t know if it was that, or my history of miscarriages, or having that seed planted that something might be wrong, but I was uneasy.
Because of that worry, at 35 weeks, my midwife sent me for a “peace of mind” ultrasound. I was eight months pregnant — huge! — and I went to the hospital thinking I was being silly. The rational side of me knew everything was fine. I figured they would tell me all was good, put my mind at ease, give me a picture and send me home.
I went to the appointment alone, on a Wednesday in May. I was so chatty with the technician while I was lying on the table. Towards the end, I said to her, “It’s funny, I keep picturing the baby I already have, but I know this one will be different.” And she looked right at me, with these serious eyes, and said, “This baby will be different. They are all different.”
While I waited for the doctor, I worked on the sweater I was knitting for my little girl. When two doctors came in, one of them asked me about it. Was I making it for the baby? I told her I was, and, with tears in her eyes, she said, “It’s beautiful.”
Then she continued. “The things they couldn’t find the last time you were here, we are seeing those things today. Your baby has brain malformation.” Right away, she said, “We might be able to arrange an abortion, we just don’t know. We can arrange an adoption if that’s what you want.”
I’m grateful that she led with that. It told me it was safe to talk to her about options, and it told me that something was very wrong. That was the only thing she said that got through to me. Everything else came up against that denial wall. Of course, she told me about keeping the baby, too.
I know she said the words “Dandy-Walker,” which I know now is a brain syndrome that has varying degrees of severity. I remember asking, “Are babies with this ever normal?” and she said that sometimes they were. She told me they couldn’t know the severity of the situation until after I had an MRI. That’s how they would determine if my baby would be OK or if she would be “incompatible with life.” Those are the words they used. Incompatible with life.
I was in total shock. I wasn’t even crying. I picked up the phone to call my husband, and all at once, I completely fell apart. By the time he got to the phone, I was unintelligible. “Where are you?” he said. I named the hospital and he said, “I’m on my way.”
We couldn’t get the MRI for two days. My parents took my daughter so that my husband and I could be miserable alone. Waiting was awful. I imagined every possibility: What would it be like to have the miracle baby who was OK and exceeded all expectations? What if she died at birth? What if she lived only a couple of years? What does it mean to get a DNR (a do-not-resuscitate order), for an infant? Hospitals are legally protected from trying to save a baby and not legally protected from letting a baby die. That was something we thought about, too.
We were in crisis, and in crisis, you don’t talk very much. You say what you need to say, and the rest is just thoughts turning around in your head constantly. My husband was wonderful. I would cry until I didn’t have any tears, and he would pick me up and carry me to our room. I knit and knit and knit. I knit in my worry and knit in my fear, and I finished the sweater. I wove in the ends, and then my husband and I got in the car and drove to the MRI.
It was a morning appointment, and at the end of that day we met with the neurologist, who told us that our baby had Dandy-Walker malformation, the most severe presentation of the syndrome. It basically meant there were holes in her brain. She also had agenesis of the corpus callosum, which meant the bridge between the two hemispheres of her brain didn’t grow. So we had two malformations, each of which had a wide range of outcomes, but, combined, had a horrible prognosis. The doctor said, “We expect your baby to have moderate to severe mental retardation; she’s going to have moderate to severe physical disability; she is probably never going to walk or talk; she will possibly never be able to lift her head; she is going to have seizures all of the time.” At first, I was thinking, “This doesn’t make sense, she’s always moving,” and then he mentioned seizures, and I understood.
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