A new three-dimensional cell model of the human placental barrier has now been developed by scientists. The “model organ” can quickly and reliably deliver new information on the intake of substances, such as nano-particles, by the placental barrier and on any possible toxic effects for the unborn child. This knowledge can also be used in the future for the development of new approaches to therapy during pregnancy.
I flew home to Pennsylvania in December to tell my dad I was pregnant with my first child. By then it had been more than a year since my father had been able to get out of the hospital bed that had taken up permanent residence in my parents’ living room. He could no longer stand, lift his arms to feed himself, or use the bathroom on his own.
“We’re having a baby.” I stood next to his bed and puffed my barely-three-months-pregnant belly toward him. He couldn’t speak, but his entire face smiled. His hand trembled as he moved it toward my stomach to touch it.
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“He kicked,” I lied and made myself smile when he made contact. It was too soon for the baby to move. But I wanted to make him happy.
Two days later my dad went to sleep. He didn’t wake up. He was 62.
The genetic mutation that caused Dad’s muscular dystrophy, the disease that caused other diseases that ultimately killed him, lives on an obscure region of his fourth chromosome called q35. Growing up, our family doctors told me I couldn’t inherit it. They were wrong.
I was married for six months when my husband Nick and I started talking to my doctor about having our own baby. The conversation covered all the standard genetics questions and the not-standard ones. Yes, my dad has this disease. No, I’m not a carrier. Are you sure? Actually, I wasn’t. I couldn’t remember the exact conversation with my family doctor. I couldn’t remember if I’d long ago created the narrative in my mind that I wanted to believe.
They took a lot of blood. Six weeks later, I heard back from a chirpy genetics counselor named Violet.
“Hi, Jo! I was surprised by your results,” she informed me in the same tone someone will tell you the winner of The Bachelor. “You do have the genetic mutation.”
I’d read once that some people swoon, actually pass out, when they hear bad news. My joints turned to butter, and I sat down on the floor to listen numbly to her directions about what to do next.
Two voices fought for supremacy in my head.
The first: You should just give up. Stop working. Fuck it! Let your roots grow out, dye your hair green, and sit with the gutter punks down on Haight-Ashbury smoking crack … because why not?
And the second: It doesn’t matter what the tests say. You’ll fight. You’re strong. You’re stronger than you know.
The first voice was so clearly mine. The second was Nick’s.
I couldn’t imagine wanting a baby, living with it in my body for three months, and then ending its brief life because of something that might happen to it in 40 or 50 years.
“You should divorce me,” I said to my husband that night, my brand-new husband who loved skiing and hiking and climbing and riding things. “Maybe the good of being married to me doesn’t outweigh the bad anymore,” I said to him the night after I talked to Violet. “You should find a hot and healthy new wife.” I paused. “Maybe not hot, but someone sturdy!”
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He looked at me like I was nuts and scratched his head. “You know, I measured it. I had these tools to measure the good and the bad of being married to you, and I set up the machine and I did all of these calculations, and you know what happened? The damn machine broke, the good outweighed the bad so freakin’ much.”
I married a good man.
We met with a neurologist to determine whether the muscular dystrophy had already started degrading my muscles. He couldn’t find anything tangible. Yet.
“Because this kind of muscular dystrophy affects the facial muscles, people often have a hard time smiling, and so people often think they’re unhappy,” the doctor said. “Do people often think you are unhappy?”
“So you’re saying a symptom of this kind of muscular dystrophy is resting bitch face?” I made a joke because it was true. Weren’t old men on the street always telling me to smile more? I’d spent most of my adult life being told to “wipe that puss off my face.” I cut to the chase. “What about our kids?”
“They have a fifty-fifty chance. You can’t screen for it in an embryo, so IVF won’t help. You can test a fetus, but not until about twelve weeks, and then you have the option of terminating the pregnancy.” The words terminating the pregnancy hung in the air like a storm cloud ready to burst any second. I opened my mouth but couldn’t say anything. I pinched my thigh above the knee, hard. My nails curled into my skin. I needed to feel something. “We should go,” I finally whispered to Nick. “I just want to go home. Please.”
I first met Meg years ago—a chance encounter at Yankee Stadium—but we lost each other in the rush to get on the subway. I checked every single subway car, but she wasn’t there. An hour later, as luck would have it, we bumped into each other again in midtown. This time I made sure to get her number. We were married 3 years later.
We had a baby. We moved to the suburbs. Meg was pregnant with our second daughter and when we saw her on the ultrasound this past February, she looked at us and blinked, clear as day. It was wild. Meg was due on May 18, the week after Mother’s Day, and we couldn’t wait for our little family of three—Meg, me and our Thomas the Train loving toddler Isabelle —to grow.
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But everything changed unexpectedly the morning of March 3, 2017, when Meg was six and a half months pregnant. Meg left before I did—I was in the shower—so she said goodbye and we said “I love you.” And when I headed to work a little later, I noticed the street was closed near our house, just by the bus stop where Meg and her brother Derek catch the bus to New York City. A little while later, Meg’s mom called me and told me Derek had been in an accident and they couldn’t get in touch with Meg. Soon my father called and told me to come home, and immediately, right then, I knew exactly what happened.
The first time I said my daughter Addy’s name out loud was when the coroner called. Meg and I had traded a bunch of emails and texts about names, and Adaline was the one we would have picked, even if we both hadn’t admitted that yet. It felt so weird to make a decision like this without her. I still look at the emails and texts she’s sent me, or listen to her voice on a voicemail. Sometimes it’s hard, sometimes it’s comforting. But I’m glad I have them.
I still look at the emails and texts she’s sent me, or listen to her voice on a voicemail. Sometimes it’s hard, sometimes it’s comforting. But I’m glad I have them.
Meg was special. She was beautiful and smart, an amazing softball player and the kind of person who loved impromptu dance parties in the kitchen. She went to church on Sundays, even if we had been out on Saturday night. She loved her parents. She was patient and kind, the kind of person you thanked God for every single day. I still do. I was lucky to have 10 years with Meg, and I know that. And sometimes when I look at Izzy, I see Meg. Like her mother, Izzy has possibly the worst poker face on the planet. If she’s excited, it’s all right there; she’s bursting. And if she’s mad, well, good luck. There’s no hiding that either. It would always make me laugh with Meg, because she could never pretend to like a gift, or a meal at a restaurant. The words might say one thing—she was always so gracious and lovely—but her face said another.
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Telling Izzy that Meg had passed was one of the hardest parts of all of this. She was so little, just a month before her 2nd birthday. And it’s hard for me to accept that she will grow up without a mother. I mean, maybe I’ll have some perspective over time, but the world is not a better place without her. I talked to a lot of experts to make sure I said the right things to Izzy—I used the word “died,” not “sleeping,” because I didn’t want her to think Meg would wake up. I didn’t tell her she was with Jesus, because she associates going to church on Sundays with visiting Jesus. Truth is, I didn’t want to give her more than she needs, but I also wanted to make sure she understood that Meg wasn’t coming back, even though some days I have trouble understanding that.
The hardest parts are the little things, like going to bed at night. Multiple times a day I think: “I can’t wait to tell Meg this story.” It might be something that happened at work or a teacher says something about Isabelle at daycare and I just want to share it with Meg. That’s the most difficult stuff, where for a split moment you forget she’s not there anymore. In those moments I kind of just shake my head and try to smile and look up.
But I can’t always muster a smile, there are many times where I am enraged and frustrated, always keeping those emotions from Izzy, knowing that it could have been different for us. Izzy and I talk about Meg all the time—if we’re talking about favorite colors, we’ll do daddy’s, Izzy’s and mommy’s—and there are pictures everywhere in our house. I used to buy Meg flowers every week and I still do. When I bring them home, Izzy says they are for mommy and we put them in the familiar places. When Izzy brings Meg up, just recently she said, “Mommy, mommy, I miss mommy,” I tell her it’s OK to miss her and I miss her too. I have to remind her we won’t see her again, but I also reassure her that I am not going anywhere.
The hardest parts are the little things, like going to bed at night. Multiple times a day I think: “I can’t wait to tell Meg this story.”
I needed to be direct and honest with her, which was difficult, but I needed her to hear it from me. She is surrounded by love—me, my parents, Meg’s parents, Meg’s brother Derek, and my siblings—and that means everything. (Our neighbors, co-workers, friends, and strangers have all been so incredibly supportive, and while I haven’t had the chance to thank them all, it’s really so appreciated.) Now when Izzy cries—she’s a 2-year-old, it’s part of the toddler experience—she says daddy, but every now and again she says “mommy,” although she catches herself. I know she misses her.
I know Meg isn’t coming back, but I still feel like we’re raising Isabelle together. For Mother’s Day, while most of the kids made cards for their moms, Izzy made them for her grandmothers. They both went to her mommy and me event at school, too. I know that she will look for female role models —I can see it already. And while no one will replace Meg, we’re so lucky to have my mother-in-law, my mom, my sister, my brother’s girlfriend and my brother’s wife around. If I have to make a decision, I often think, ‘what would Meg do?’. That doesn’t mean I do exactly what she would have done, but I play it out—what I would have said, what she would have said, and where we would have ended up. I still tag Meg in everything on Facebook, too. She has friends that I’m not friends with and I want them to see Izzy and still be a part of our life.
This Mother’s Day, and every other day, I want Izzy to know how loved she is by me, how much Meg loved her and how important she was to Meg. I want her to know the compassionate, loving, and brilliant woman her mother was, the foods she loved and the songs she liked. I want her to know that she has a mother, someone who loved the title of ‘Izzy’s mommy’ above all else.I don’t ever feel alone and I don’t want Izzy too either. Meg and I are raising our child together and the three of us are still a family.