Because no two paths to parenthood look the same, the Cut’s How I Got This Baby invites parents to share their stories. Want to share yours? Email firstname.lastname@example.org and tell us a bit about how you became a parent.
Alyssa’s* pregnancy was a planned one. She was married; she and her husband both had professional jobs. Because she had no concerns going in, the results of routine tests for chromosomal abnormalities initially came as a shock — it was through research, a support group, and friends that Alyssa and her husband adjusted to what they thought would be their new reality. After the pregnancy unexpectedly ended, Alyssa was left with complex emotions and the desire to have more children. She describes what no one tells you about stillbirth, spending Halloween in the pediatric ICU, her logic about adding “one more kid to the pile,” and the most important reason she works full-time.
On what seemed like a very basic, happy time. I had a very early miscarriage — a chemical pregnancy — where I thought I was pregnant for about 36 hours. At the time, it was very sad for us. (Little did I know.) Then, at the end of 2009, I got pregnant. I was in my late 20s, my husband was a few years older. We’d bought a house, we both had jobs.
Everything was going along normally, and then it was time for the nuchal tests, to look for chromosomal abnormalities. We had no concerns; we did the tests because my insurance paid for them. I think of myself as a Joe Biden Catholic: My religion is important to me, but I wouldn’t say I’d absolutely never consider an abortion because you never know what circumstance you might be in. A baby with no chance of survival, who would be born in pain only to die? I would think about it. For my husband and me, we knew something like Down syndrome would be difficult but we’d handle it — we wouldn’t end the pregnancy.
The nuchal test results showed 1 in 20 chance of Down syndrome. They were like, You need an amnio today. Looking back, I’m sure we were staring down an abortion deadline.
On imagining life with Down syndrome. Most of my friends were like, Relax, it probably won’t happen. But I have one friend whose brother has Down syndrome. She didn’t tell me to relax. She just said that it would be okay.
The results came back and said the fetus definitely had Down syndrome. I was in a different office building than usual and just ran sobbing to my car. At the time, it was the hardest 15 minutes of my life, driving home. But I started doing research, and we were referred to a really wonderful Down syndrome organization. They were like, Congratulations! The world is totally different now, but all is not lost. There are so many more options now — school integration, resources, so much more than when I was growing up.
We started feeling like it was very doable, definitely not the end of the world. Armed with new information, we started telling friends and family. My mom was very sick at the time, ping-ponging from hospitals with lots of her own health issues. When I told her, she didn’t say, “You should get an abortion.” But she brought up the possibility in a pointed way. She was a very intellectual person who prided herself on intelligence — I think having a grandchild with special needs would have been a little bit hard on her.
On not having a way to make a hard situation easier. At about 26.5 weeks along, I had an appointment and mentioned I hadn’t been feeling the baby move very much lately. My doctor took us into the sonogram room — and the baby didn’t have a heartbeat. She said she was sorry, and walked out of the room. I didn’t need anyone to be warm and fuzzy with me, but she just — walked out of the room.
My husband and I were sobbing, and I was immediately consumed by guilt because, in a way, I got what I wanted. I didn’t want to have a baby with all these problems. And I got it the easy way — I didn’t have to have an abortion. I was very, very sad, but I also had some relief, and guilt over the relief. My therapist has told me that’s very natural, but at the time, you feel like kind of an asshole.
Our doctor came back into the room and explained we couldn’t have a D&C — she said they don’t learn how to do abortions that late. And since a C-section is major surgery, that wasn’t an option either. It blew my mind that there was no way to make a hard situation a little bit easier. I had to be induced.
After about 24 hours of labor, the baby came very quickly. It was very, very painful; I think the epidural didn’t take. He was very small, under 2 pounds, but he was sunny-side up, the painful way. I decided not to see him or hold him. Now that I’m a parent to three other people, it seems kind of crazy. But at the time, I just knew that if I held him, I might not be okay. So I decided that he had gone when he’d died and his body was something I did not need to have a connection to. People asked me 20 times, I’m not kidding, 20 times whether I was sure. I was very sure.
The other thing they don’t tell you is that when you have a baby that’s viable, they don’t dispose of the body at the hospital. This happened to us on a Saturday, and there was no social worker available. So someone just handed my husband a list of funeral homes and explained that often funeral homes will cremate the baby’s body for free, since they’re so small. If it had happened on a weekday, a social worker would have been the one to call and ask if someone would, you know, burn our baby up. But my husband had to be the one to do it. We were lucky — we found a nice family-run place.
On the desire to have multiple kids. My son, Tommy, was born 11 months after the stillbirth. He was born totally healthy, and I felt awesome — along with crippling guilt.
After Tommy, I really wanted to have another baby. I’m an only child and I wanted my child to have a sibling. So I got pregnant again, another totally healthy pregnancy and birth, a C-section this time. I didn’t care how the baby came out — just that he was okay.
We went home with our new baby, plus Tommy, who was 2.5 by then. Tommy was throwing up, but we just thought, ugh, a sick toddler while we have a newborn. The pediatrician wasn’t very worried; I remember calling while the baby cried in the background. A few days later, Tommy was sent home from school for throwing up. The next day, my husband took him to the pediatrician — and I started getting all these texts. Tommy needs to go to the hospital. Tommy needs an ambulance.
I just put the baby in the car seat and drove, screaming the whole way.
By the time I got to the hospital, he was hooked up to all these machines while they ran tests. There was a child-life specialist — a person whose job it is to distract sick kids — with an iPad and bubbles. Eventually, after a CT, they took us into a little room. I’m sure it has an innocuous name — but I suspect it’s known as like the shit-has-gone-down room. They brought us in there and told us he had a mass at the base of his skull.
On the place where “every room has five IV poles and a tiny child inside.” The surgery was set for the next day. In the PICU, the pediatric ICU, you have a doctor assigned to you, plus a nurse and, depending on the severity of the situation, the nurse might be assigned only to your kid. That’s how scary it is: One person’s sole job is tending to your child.
The PICU is such an intense place — every room has like five IV poles and a tiny child inside; there are bars on the hospital cribs. Everyone is having their own absolute worst time. Tommy got sick October 30, so we were in the PICU for Halloween. Everyone who worked there dressed up. I was so, so angry, not appreciating that these doctors and nurses do the hardest thing every day. Of course they want to dress up like a Minion and bring a smile to some kid’s face. But at the time, I was so angry — these people weren’t acting like the world was ending, and the world was ending.
Our son was going to be a shark. He’d been talking about how he was going to be a shark; we had this dumb costume I’d gotten secondhand. It was so cute, and we were so excited. That was supposed to be his first real Halloween.
He had brain surgery on November 1. I remember waking up that day and deciding it was going to be a good day because this was going to be the day they were going to save his life. And they did. They saved his life.
On the most important reason she works full-time. We lived out of state for two months while Tommy was undergoing radiation. I have a whole other spiel about how having a cancer kid means one parent needs to watch the kid full-time. The kid gets a fever, the kid could die. I really believe that parents who can’t do this, their kids die. Because of my mom and her health issues, I’m very comfortable navigating insurance and communicating with medical staff. And you just think: What about people who aren’t?
We had the best-case scenario of the worst thing. At my job, you can donate leave — people across the country donated to me, so I was paid and on leave for 18 months. My husband was able to take three months of leave. And we just barely made it.
Sometimes people look at me like I’m crazy because I have three kids and work full-time. And I’m like — are you crazy? Insurance. With everything going on right now with the ACA and lifetime caps, I just think about what could have happened to us. It’s petrifying.
On what happens after thinking your child is going to die. Once we were back home, Tommy was in treatment for about six months, meaning he was on chemo for a year. He had a big setback: two back-to-back infections, then a stroke, a small one but definitely a stroke — and they thought the tumor was back. He was really, really sick, and it was really, really terrifying. We went back to the PICU.
They brought a palliative team on, and I made one of the nurses give me like three books on your kid dying. I made his doctor tell me whether the chemo had ravaged his body, or if we could still donate his organs. I just decided I’d find out everything I needed to know before, so if he died — then I’d know what to do. I’d be ready.
But then we learned the tumor wasn’t back, and we were enormously relieved. People were elated that we beat the cancer, but they didn’t quite understand how high the price was. This was actually one of the roughest times — because we didn’t quite know what Tommy’s future outlook was. In the moment, he was exhausted from the stroke and complications, like a wet noodle.
When you think you know your kid is going to die, everything is so clear. Actually living life with a kid who might not be able to walk or talk, who has cognitive issues, is a lot more complicated. There are a lot more opportunities for you to fuck it up.
On what her family looks like now. I went back to work, and Tommy started school. And then I just sort of talked to my husband and was like, I think we need to have another kid.
My thinking was, we didn’t know if Tommy was going to live. The cancer could come back. But if he does live, he’s not going to be typical. Is one kid going to be the healthy kid? And the other kid is the sick, disabled one? What if we threw another body in the mix, added one more kid to the pile? Maybe that would create some balance. I just wanted to normalize everything — Tommy is a kid, he likes Paw Patrol, he doesn’t want to go to school, he wants to go to the park. He’s a human being, a person who’s complicated and interesting. But he’s different from other kids.
My husband was working and trying to finish a Ph.D., but soon he started to get onboard. I got pregnant not that long afterward, and I had another baby boy. I see our now 3.5-year-old interact with him — the one who was a baby while Tommy was so sick — and know they’re going to be lifelong friends. I’m glad we did it. In retrospect, it seems like maybe a very stupid decision. Some of our family and friends were like, Was this … planned? I suspect people would never admit they regret having a child, but I really don’t. He’s a gift and a light, and while I’m sure having yet another person to take care of will be hard, it feels like a good thing.
People think about special-needs parents and I’d call it something almost like pity porn. I’m happy to talk to people who are in a similar position or close friends. But when strangers ask too many questions, you’re like, Lady, I’m just living my life in a grocery store. If you ask Tommy why he needs a wheelchair, it’s like asking him why someone has brown hair. We all just need to get used to people being different — it’s no secret, it’s just a fact. It’s just our lives.
*Names have been changed for privacy.