When Kate, a 29-year-old mom outside Boston, found out she was pregnant with a second daughter, she was elated. Then, at 36 weeks along, she got the news that is every expecting parent’s worst nightmare: Her baby, whom she would later name Rose, had two brain malformations. Kate decided to have an abortion, and eventually found solace in a support group on the website Ending a Wanted Pregnancy. The online community is for parents who terminate pregnancies for medical reasons (pregnancies they wanted, but chose to end after a severe prenatal diagnosis or maternal health issue) and who often feel alone or ashamed, and suffer in silence. Kate, one of the site’s administrators, shares her story with Yahoo Parenting’s Rachel Bertsche.
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 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.
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.
In that moment, I had to shift my thinking. I was hoping for special ed, and had been focusing on questions like: How much should you save to know your special-needs daughter will be OK after you die? I was thinking about long-term care and mild to moderate disability. Instead, I had to think about a baby who was probably not going to live very long, and the longer she lived, the more pain she would be in. That realization – that I was more scared of her living than of her dying — is what made the choice for me.
When it comes to a decision like this, there is no good option. What you want is a happy, healthy baby. The doctor asked if we had any questions, and I said, “What does a baby like this do? Does she just sleep all day?” The doctor looked so uncomfortable. He said, “Babies like this one are not generally comfortable enough to sleep.” That’s when we thanked him and left.
On the way home, even though I knew what I wanted to do, I couldn’t say the word. What kind of mother is eight months pregnant and wants an abortion? I turned to my husband and said, “Tell me what you think we should do.” He said, “Kate, you do not have to do this, but I think we should ask about the abortion.”
I called my doctor as soon as I got home. While we were waiting for her to call back, I didn’t know if we had a safe and legal option. I remember thinking, “If we can’t get the abortion, I’m going to run away somewhere rural and I’m going to have this baby by myself and let her die without intervention.” That would have been so dangerous, and I could be dead right now. She was a high-risk birth, not a regular healthy birth. Her head could have swollen with fluid at any time. Even if it went smoothly, and I had my baby and she had died in a few hours, I could have been put under investigation. The risks that I was willing to take to let this baby go in peace, in the way I believed she deserved — it’s terrifying. But I was desperate, and I was so untrusting. I was scared the police would get called on me for just having these thoughts.
My doctor called back at 6:30 that night. It was a Friday, and my husband and I were out for a walk when the phone rang. Immediately, the doctor said, “I am so sorry, but if you want the abortion you need to call before 7 pm, which is the end of the workweek Mountain Time, because the clinic closes for the week in a half an hour. And you have to be on a plane to Colorado on Monday.” We were in Boston, where there are a million medical schools and hospitals, but the only doctor in the country who would perform this late an abortion was in Colorado. (Actually, there was one other, but that clinic was closed for the week.) My doctor barely had time to explain everything, she just said I’d have to be in the clinic on Tuesday. It was a four-day procedure, and I had to have it done by Friday, when I would be 36 weeks pregnant. There is no doctor in the country who performs abortions after 36 weeks.
Then she added, “You have to show up with $25,000.” We didn’t have $25,000 sitting around. We are a middle-class family. We don’t have that kind of credit, either. But it didn’t matter. I would figure it out.
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