Evolutionary biologist Sarah Hird's first pregnancy becomes a crisis in her scientific faith when doctors warn her that there may be something severely wrong with her baby.
Sarah Hird is an Assistant Professor in Molecular and Cell Biology at the University of Connecticut. Her primary research interest is in how the microbiome has interacted with avian evolution. What role have microbes played in bird diversification and does this role differ from other major branches on the tree of life? She is also interested in how we can diversify and democratize the STEM fields and Academia. Dr. Hird holds a Master’s degree from the University of Idaho and a PhD from Louisiana State University. She was a Chancellor’s Postdoctoral Fellow at the University of California Davis.
This story originally aired on April 5, 2019 in an episode titled “Peace.”
Story Transcript
In June of 2013, I was driving across the desert southwest with my husband. It was a miserable car ride. It was 115 degrees outside the car, it was probably 95 degrees inside the car, and the whole car smelled like hot dog breath because our black dog was in the black backseat of our black car overheating and stressed out and very not-subtly hating us for doing this to her. But I couldn’t have been happier.
We were moving from Louisiana to California because both my husband and I had just earned PhDs at Louisiana State University and we had both landed great jobs, postdocs, in two great labs at the same great university, University of California, Davis.
The cherry on the top of my perfect life was that I was five months pregnant with our first child, a big healthy baby boy we nicknamed Bubba.
When we got to California I needed a new doctor and this new doctor ordered an ultrasound just to have on file some pictures and measurements. A few days after the ultrasound, our doctor called and the first things she said was, “I’m so sorry.”
She then told us that the baby was big, we knew that, but that his head was too big and his kidneys were way too big and that these two symptoms were consistent with a lot of terrible genetic disorders that ranged in severity from mild cognitive delay to severe mental and physical disability to death within the first year of life to stillbirth.
I was taking notes. I understood the words she was saying, like ‘chromosomal deletion’. I’m a biologist. I knew what those words meant but I was very confused because our son was healthy.
I said, “Does he have one of these syndromes?”
And she said, “Yes, we think he does.” So there was a ‘we’.
Over the next three months, I had 24 doctors’ appointments. They checked his heart. They checked that his kidneys and bladder were functioning. They monitored his size and looked for physical deformities.
We saw a genetics counselor who ordered some tests for my husband and this appointment was most memorable because, on our way out the door, she says to us, “If you want to do something, it’s too late for California. You have to go to New Mexico,” casually telling us to cross state lines if we want to abort Bubba.
They checked his brain with a fetal MRI and when that came back positive, all these tests were coming back no new symptoms, no new deformities, no new problems. In the sanity of our own home, my husband and I began to whisper to each other, “What if it’s just a big head and a kidney problem? What if it’s that?”
So at the next specialist appointment that we went to, we asked the doctor, “Is that possible? Is it possible he’ll just have a big head and a kidney problem?”
And her exact words were, “We are very confident that this is a true finding.”
I was crushed. I’m a scientist. I know what those words mean, ‘confident’, ‘very confident’, ‘true finding’. That meant that they had irrefutable data. It meant that they had robust conclusions based on evidence. And it meant that any other doctor who looked at our file would draw the exact same conclusions.
It also, to me, wasn’t just a woman giving me her opinion, it was a scientist backed by a team of scientists. It might as well have been science itself telling me that, statistically, we had no hope.
During this time, I emotionally shut down. We had just moved. We didn’t know anybody. I didn’t have any friends. We didn’t have any family in the area. I had my husband, thankfully, who was going through all of this by my side and for himself, and he dealt with it by working a few extra hours and reading medical literature. He's also a biologist so he was reading about kidney problems and head sizes and he was able to convince himself that we did have hope, that the doctors could be wrong. But I was having none of that.
I read one time on a website for families with children with disabilities that sometimes you have to grieve the child you thought you were going to get in order to accept the one that you did get. So I spent my time just holed up in this emotional bunker doing just that. I killed and grieved a healthy baby and the life I thought we were going to get to make room for our real son.
So this meant violently rejecting any happy thought that popped into my stupid head. The image of teaching him to drive or high school graduation, learning to read, would he look more like me or my husband, even changing a diaper I stopped as soon as I realized I was thinking about it.
But because we didn’t have a diagnosis I didn’t know what to make room for. So I sat in my bunker and just visualized as vividly as I could all the potential futures before us. What did mild cognitive delay look like? Maybe a tutor. Maybe he lives at home his whole life.
What if it was physical disability? What if he couldn’t walk, talk? What if he couldn’t swallow or feed himself or use the bathroom?
Would he be in pain? Would he be developed enough to know that other kids were making fun of him?
I weighed the pros and cons of stillbirth and I wondered what would happen to my marriage. I didn’t have a baby shower of any form because I couldn’t pretend to be happy about anything. I didn’t buy a single piece of baby clothes because I wasn’t sure I would have someone to put in them.
And I stopped talking to him. It had been that when I felt him move the first time in the morning I would say, “Good morning, Bubba.” He whacked me real good in the bladder I'd say, “Oh, you're getting so strong, Bubba.” But for a while he would kick me and I wouldn’t say hello back.
My due date approached. They said he was probably ten or ten-and-a-half pounds and they were pretty sure that his head was too big to come out of me, so we scheduled a C-section. Never felt a contraction. We just showed up to the hospital at the appointed time.
C-sections are not fun. I was awake from about the sternum up thanks to a large needle in my spine. The room was very cold and it was full of people I didn’t know. It was a teaching hospital so there were a bunch of people in the room all wearing pale green scrubs, the sea foam-colored ones.
After everything was prepped, in came the main surgeon and she was wearing all the colors. These were like strobe lights, confetti bomb scrubs. And she picked a Beatles album to play during the surgery. She said to someone, “If she's hiding a ten-pounder in there I'll be shocked.”
C-sections are blessedly quick. Before long, they were telling me I was going to experience some tugging and pressure, which was grossly accurate. I was being jostled around to a really surprising degree and I see the surgeon put her weight down on my belly in a CPR-like maneuver and then they say, “He's out.”
There was silence for somewhere between half-a-second and a million years. And then he cried.
My first thought was, “How fucked up does he look?”
They wrapped him up and they brought him over to me, put him real close to my face. I wasn’t wearing my glasses, so he was right there and he was purple and he was scrunched up and he was weird looking. He was screaming and covered in crud.
My next thought was, “Get him away from me and get him to a doctor,” which is what they did. I didn’t say that out loud. My husband went with him.
I’m lying there on the table by myself, violently shivering at this point, and I’m wondering how long it will be before we have a diagnosis. How long before we know for sure who our real son is.
Then the surgeon has a question for me. It briefly flashes in my head that maybe she can tell something from the placenta or something, my guts somehow. And she says, “Hey, have you been constipated lately? I've got your colon over here and it looks like you might have been having a problem.”
I don't know what I said to her about that. Maybe, “Thank you.” I don't know.
My son Cormac was nine-and-a-half pounds when he was born and his head was in the 99.999, I don't know how many nines, percentile for size. He didn’t have to go to the intensive care unit right away or anything, so the first time he saw a pediatrician was in our shared hospital room about 12 hours after he was born.
This woman comes in with a crew of residents, or whatever they're called, and we tell her our story. We tell her our concerns as quickly as we can and say, “Please, examine him.”
And this woman saw the bunker. She was warm and kind to us. She says, “Okay, let’s take a look,” and she examines our son.
After a few minutes, she wraps him back up and she says, “I think you've got one of the good ones. We’ll see you tomorrow.”
Obviously, I don't believe her because that can’t be possible.
She comes back the next day and she says she read our file. She measures my head and she measures my husband’s head, and she offers to be our pediatrician when we get out of the hospital, which we accept.
She says, “Okay, let’s take a look.” She examines him and she says, “He looks great. We’ll see you next week.”
About 60 hours after we left our house to go to the hospital, we return with a possibly healthy baby? I didn’t know what to do. This wasn’t how it was supposed to go. We were supposed to be visiting him in a hospital incubator or something. What the hell do you do with a baby?
So we go to the doctor the next week thinking, surely, this is the time that they will find the symptom that is indicative of the disease they were sure he had.
And she says, “He looks good. We’ll see you next week.” And then it’s, “He looks good. We’ll see you in two weeks.” And then it’s two more weeks and then it’s four weeks and then it’s eight weeks and then it’s three months and then it’s another three months and then it’s six months and then it’s, “We’ll see you next year.”
Now, he turns five at the end of this month and he just started kindergarten. He's a tall kid. He's a heavy kid. He has a big but mostly proportional head. He's hit all his developmental milestones. His kidneys are fine. He's happy and outgoing and he's bright in every sense of the word. He loves making people smile and he really wants to be funny. But he's not funny. Because he's four and he writes his own material and every punch line has the word ‘poop’ in it.
So what happened? I don't know. I don't know if the big head I noticed basically everyday is because there's a critical error in my son’s genome that makes him at a higher risk for pediatric cancer or if the big head I see every day is because his dad is 6’4” and also has a big head.
It’s unresolved and part of the reason it’s unresolved is because I never got to hear from those specialists what they thought happened. I never saw them again because they were pregnancy doctors. I never got to say, “Here he is. What do you think now?”
I wonder if they even know that he seems healthy. I wonder if they ever followed-up or thought about him. I wonder if they ever thought about me, because I have certainly thought of them many, many times in the past five years. I will remember some of their words forever. And I wonder if they know about bunkers.
My bunker is still inside me and part of me is still inside the bunker. I know this is true because every time, literally every time in the past five years when I start to complain or feel sorry for myself for any of the many daily unpleasantries that come with parenting, anytime I start to complain about dealing with bodily fluids or rearranging my schedule again or being woken up at just the right spot in the sleep cycle where it hurts to open your eyes and I go, “Oh, my God, this is the worst,” a voice in the back of my head clears her throat.
And she says, “What the fuck did you just say?”
And I go, “Oh, I don't know how I forgot but I forgot. And I’m sorry, this is not the worst. This is not the worst.”
Driving across Arizona, I knew my son was healthy. Living in California, I knew I was going to watch him die. Now, I see him every day and I don't know anything. Thank you.