My wife Keri and I went in for the standard 19-week anatomy scan of our second child. As a parent, you think that appointment is all about finding out boy or girl, but it’s about a whole lot more.
In our case, our daughter was diagnosed with a rare birth defect called anencephaly — some 3 in 10,000 pregnancies rare. The phrase our doctor used in explaining it was "incompatible with life," which looks as terrible in words as it sounds. The child fails to develop the frontal lobe of the brain or the top of their skull. The chance of survival is 0%. We sat in a doctor’s office, five months before our daughter was to be born, knowing she would die.
The options weren’t great. There was (a) inducing early, which in effect was terminating the pregnancy or (b) continuing the pregnancy to full term.
Within a minute or so of finding out, Keri asked if we could donate the baby’s organs if we went to full term. It was on her heart and mind, but we left the doctor and still spent the next 48 hours deciding what we were going to do. It was excruciating. We considered terminating. We had to. Were we capable of taking on the weight of the 20 weeks ahead? In our minds, we were intentionally taking on the loss of a child, rather than the loss of a pregnancy. And, yes, there is a difference.
We decided to continue, and we chose the name Eva for our girl, which means "giver of life."
The mission was simple: get Eva to full term, welcome her into this world to die, and let her give the gift of life to some other hurting family.
It was a practical approach, with an objective for an already settled ending point. We met with an organ procurement organization called LifeShare of Oklahoma and found out we’d be the eighth family in the state to donate the organs of an infant.
There wasn’t much of a precedent or process in place because, until only recently, most parents of anencephalic babies didn’t know it was an option. There’s this weird gray area involved because, even without a brain, these babies can’t be declared brain dead. Her heart would need to stop beating, leaving a finite window of, let’s call it, "opportunity," to recover her kidneys, liver, and maybe pancreas and heart valves. We asked about other things, like her eyes or corneas, but LifeShare told us they’d never done that before, even with an adult.
All photos by Mitzi Aylor/Alyor Photography. Used with the permission of Royce Young.
Part of the difficulty of the decision to carry on was the physical pregnancy and the mental burden of carrying a baby for 20 more weeks knowing she would die. The kicks and punches to Keri’s bladder served as a constant reminder of what was inside. (Yes, Eva kicked like any other baby; her brainstem was complete, which is what controls basic motor functions. I know, we had a hard time wrapping our minds around it too.) She feared people asking what she was having or the due date or if the nursery was ready.
What we unexpectedly found, though, was joy in the pregnancy. We happily talked about our sweet Eva, and day by day, our love for her grew. We got excited to be her parents.
I think a big part of that was connected to the decision we made to continue on, which was empowering. She had a name, an identity, and a purpose. The idea of choice in pregnancy is a complicated one, and one I kind of want to avoid here. Wherever you fall, just know, we were empowered by our decision, our responsibility to be Eva’s mom and dad for as long as we could. We went from seeing the pregnancy as a vehicle to help others to looking forward to holding her, kissing her, telling her about her brother, and being her parents.
The time we’d have was completely unknown, with it ranging anywhere from five seconds to five minutes to five hours to, in some more optimistic estimates, five days.
We decided to have a planned C-section. We wanted to maximize our chances of seeing Eva alive and be able to control as many variables as possible.
There wouldn’t be any surprise labor in the middle of the night. We could have our first child Harrison there to meet his sister and grandparents ready to hold their granddaughter even if she was only alive for an hour or so. We wanted to do what was best for our girl. That’s what parents do.
As the date neared, the meetings and appointments cranked up. We had what everyone called the "Big Meeting," a gathering at Baptist Hospital of about 30 people that included multiple people from LifeShare, NICU nurses and doctors, neonatologists, and other "Very Important Hospital People." We were the first infant organ donor ever at Baptist, and they were developing a protocol on the fly. There were plans and contingency plans and contingency plans for the contingency plans.
The process was going to be delicate, and to be frank, it seemed increasingly unlikely that it would work. There were a lot of things that were going to need to go just right, even with the intricate plans that were being put in place. It was made clear to us over and over and over again how if Eva’s kidneys or liver didn’t go directly for transplant, they would go to research, and infant organ research is incredibly valuable.
But I wanted a tangible outcome. I wanted to be able to meet and hug and shake the hand of the person my daughter saved.
I couldn’t dream about what my daughter would grow up to be, so I fantasized about the difference she could make.
What if the person who got her kidneys became president? What if her liver went to a little boy and he goes on to win the Heisman Trophy? I was writing the "30 for 30" script in my mind every night as I went to sleep. It was something to hold onto; it was the kind of hope I wrapped up with both arms. Research was nothing more than a fail-safe to me, a Plan B that I didn’t want any part of.
There were some concerns from the hospital's ethics team about Eva and our plans. As I explained to them — and to anyone else out there who has this idea that we grew a daughter just for her organs — Eva was a terminal child. And as her parents, we elected to make her an organ donor. That’s it. She would be born, live an indefinite amount of time, and then we were choosing to donate her organs.
Then suddenly, we were in the two-week window. In two weeks, we’d be prepping to welcome our baby girl into the world and preparing to say goodbye to her.
I planned on sitting down that day to write Eva a letter, like I did before Harrison was born to give him on his 18th birthday. She’d never read it, but I was going to read it to her. Keri didn’t feel Eva move much that morning, but we both brushed it off and went to lunch. We came home, put Harrison down for a nap, and Keri sat down in her favorite spot and prodded Eva to move. She wouldn’t.
We started to worry. Keri got up, walked around, drank cold water, ate some sugary stuff. She sat back down and waited. Maybe that was something? We decided to go to the hospital. We held on to hope that we were just being overly anxious and didn’t take any bags.
We arrived, and a nurse looked for a heartbeat on the doppler: nothing. Not unusual; it was sometimes hard to find because of the extra fluid. They brought in a bedside ultrasound machine and looked. It seemed that maybe there was a flicker of cardiac activity. They told us to get ready to rush in for a C-section.
I just remember repeating, "I’m not ready I’m not ready I’m not ready I’m not ready." I was supposed to have two more weeks. What about the plan? What about Harrison? What about Eva’s aunts and uncles and grandparents? What if they couldn’t make it in time? What about her letter?
They brought in a better ultrasound machine. Keri and I had seen enough ultrasounds to immediately know: There was no heartbeat. Eva was gone before we ever got to meet her. The brain controls steady heart functions, and Eva’s finally gave out.
Keri rolled onto her side and put both hands over her face and let out one of those raw, visceral sobbing bursts. I stood silently shaking my head.
We had tried to do everything right, tried to think of others, tried to take every possible step to make this work, and it didn’t. No organ donation. Not even for research, our fail-safe. We felt cheated.
The word I still have circling in my head is disappointment. That doesn’t really do it justice because it’s profound disappointment. The kind of disappointment that will sneak up on me at different times, like when I’m mowing the yard or rocking Harrison or driving to a game.
Since there was no reason to control variables anymore, the doctors induced Keri into labor. The rest of Sunday and into Monday morning were the darkest, most painful hours of our lives. We had previously come to terms with the outcome and had almost found a joy in the purpose of our daughter’s life. We had looked forward to meeting her and loving her. We knew we’d hurt from her loss, but there was hope in the difference she was making. We had heard from recipients of organ donation that were so encouraging and uplifting.
But the deal got altered. It felt like we were letting everyone down. (I know how ridiculous that sounds.) I felt embarrassed because all that positivity about saving lives wasn’t happening now. (I know how ridiculous that sounds.)
On top of it all, the ultimate kick in the gut: We wouldn’t even see her alive. I struggled with the idea of Eva’s existence and her humanity all along, about whether a terminal diagnosis made her dead already. I clung to knowing her humanity would be validated to me when I saw her as a living, breathing human being. I wanted to watch her die because that would mean I got to watch her live. I longed for just five minutes with her — heck, five seconds with her. All of that practical stuff about organ donation was irrelevant to me now. I just wanted to hold my baby girl and see her chest move up and down. I just wanted to be her daddy, if only for a few seconds.
Eva came surprisingly quick on Monday. Keri forced me to go get some lunch — a sad, lonely lunch featuring me taking bites of chicken fingers in between sobs — and I got back to the hospital around noon. Keri sat up and felt some pain. Then she felt another shot of pain ring through her body. Our photographer had just arrived and was setting up. Keri started to panic and asked for nurses to come in. They checked her, and it was time to have a baby. I still wasn’t ready.
At 12:20 we called our family and told them to hurry.
At 12:30, our doctor, Dr. Pinard, arrived.
At 12:33 and 12:35, Laurie from LifeShare tried calling Keri.
At 12:37, Eva Grace Young was born. I cut her umbilical cord at 12:38.
My phone rang at 12:40 and 12:41, and then a text came. It was Laurie from LifeShare. "Hey Royce, it’s Laurie . Will you give me a call when you get a chance? I think I have some good news for you."
Keri and I held each other and cried as the nurses cleaned Eva, and Dr. Pinard called LifeShare for us.
Then, she walked up to the foot of the bed.
"I’m on the phone with LifeShare," Dr. Pinard said, a smile cracking through on her face. "They have a recipient for Eva’s eyes."
It’s weird to say that during probably the worst experience of my life was also maybe the best moment of my life, but I think it was the best moment of my life.
The timing of it all is just something I can’t explain. It wasn’t what we planned or hoped for, but it was everything we needed in that moment. I buried my head in my arms and sobbed harder than I ever have. Keri put her hands over her face and did the same. Happy tears.
This was our reaction when Dr. Pinard told us about Eva’s eyes.
As the nurses handed her to us for the first time, much of the dread and fear was lifted from us and replaced with hope and joy again. Here comes Eva Grace Young, the superhero she was always meant to be.
None of it went as we planned. We’re trying to rest on knowing we did the best we could. We always said we wanted to limit our regret, and I think in 20 years or so, as we reflect on this, there’s not much we’d change.
We’re proud to be Eva’s parents. We’re thrilled with the impact she’s made. People from around the world have sent us messages telling us they’ve signed up to be organ donors because of Eva.
Eva’s the first ever — not baby, but person — in the state of Oklahoma to donate a whole eye, and she donated two.
Because of her, LifeShare has made connections in other states to set up eye transplants for the future. They have an infant organ donation plan they now are working with sharing with other organ procurement organizations in Colorado and Texas. They call it the Eva Protocol.
I keep thinking about looking into her eyes some day, but more than anything, I think about her eyes seeing her mom, dad, and brother.
We always wondered things about Eva, like what color her hair would be, if she’d have Harrison’s nose, if she’d have dimples like her mama, or what color her eyes would be. In the time we spent with her, one eye was just a little bit open, and I fought the temptation to peek. I can’t ever hold my daughter again. I can’t ever talk to her or hear her giggle. But I can dream about looking into her eyes for the first time one day and finding out what color they are.
This story first appeared on the author's Medium and is reprinted here with permission.
12 non-threatening leadership strategies for women
We mustn't hurt a man's feelings.
Men and the feels.
Note: This an excerpt is from Sarah Cooper's book, How to Be Successful Without Hurting Men's Feelings.
In this fast-paced business world, female leaders need to make sure they're not perceived as pushy, aggressive, or competent.
One way to do that is to alter your leadership style to account for the fragile male ego.
Should men accept powerful women and not feel threatened by them? Yes. Is that asking too much?
IS IT?
Sorry, I didn't mean to get aggressive there. Anyhoo, here are twelve non-threatening leadership strategies for women.
Encourage.
With permission from Sarah Cooper.
When setting a deadline, ask your coworker what he thinks of doing something, instead of just asking him to get it done. This makes him feel less like you're telling him what to do and more like you care about his opinions.
Sharing ideas.
With permission from Sarah Cooper.
When sharing your ideas, overconfidence is a killer. You don't want your male coworkers to think you're getting all uppity. Instead, downplay your ideas as just "thinking out loud," "throwing something out there," or sharing something "dumb," "random," or "crazy."
Email requests.
With permission from Sarah Cooper.
Pepper your emails with exclamation marks and emojis so you don't come across as too clear or direct. Your lack of efficient communication will make you seem more approachable.
Idea sharing.
With permission from Sarah Cooper.
If a male coworker steals your idea in a meeting, thank him for it. Give him kudos for how he explained your idea so clearly. And let's face it, no one might've ever heard it if he hadn't repeated it.
Sexism.
With permission from Sarah Cooper.
When you hear a sexist comment, the awkward laugh is key. Practice your awkward laugh at home, with your friends and family, and in the mirror. Make sure you sound truly delighted even as your soul is dying inside.
Mansplain.
With permission from Sarah Cooper.
Men love explaining things. But when he's explaining something and you already know that, it might be tempting to say, "I already know that." Instead, have him explain it to you over and over again. It will make him feel useful and will give you some time to think about how to avoid him in the future.
Mistakes.
With permission from Sarah Cooper.
Pointing out a mistake is always risky so it's important to always apologize for noticing the mistake and then make sure that no one thinks you're too sure about it. People will appreciate your "hey what do I know?!" sensibilities.
Promotions.
With permission from Sarah Cooper.
Asking your manager for a promotion could make you seem power- hungry, opportunistic, and transparent. Instead, ask a male coworker to vouch for you. Have your coworker tell your manager you'd be great for the role even though you don't really want it. This will make you more likely to actually get that promotion.
Rude.
With permission from Sarah Cooper.
Sometimes not everyone is properly introduced at the start of a meeting. Don't take it personally even if it happens to you all the time, and certainly don't stop the meeting from moving forward to introduce yourself. Sending a quick note afterward is the best way to introduce yourself without seeming too self-important.
Interruptions.
With permission from Sarah Cooper.
When you get interrupted, you might be tempted to just continue talking or even ask if you can finish what you were saying. This is treacherous territory. Instead, simply stop talking. The path of least resistance is silence.
Collaboration.
With permission from Sarah Cooper.
When collaborating with a man, type using only one finger. Skill and speed are very off-putting.
Disagreements.
With permission from Sarah Cooper.
When all else fails, wear a mustache so everyone sees you as more man-like. This will cancel out any need to change your leadership style. In fact, you may even get a quick promotion!
In conclusion...
With permission from Sarah Cooper.
Many women have discovered the secret power of non-threatening leadership. We call it a "secret power" because no one else actually knows about it. We keep our power hidden within ourselves so that it doesn't frighten and intimidate others. That's what makes us the true unsung heroes of the corporate world.
About the Author: Sarah Cooper
Sarah Cooper is a writer, comedian, and author of 100 Tricks to Appear Smart in Meetings. Her new book, How to Be Successful Without Hurting Men's Feelings, is out now.
The comedic book cover.
With permission from Sarah Cooper.
A satirical take on what it's like to be a woman in the workplace, Cooper draws from her experience as a former executive in the world of tech (she's a former Googler and Yahooer). You can get the book here.
This article was originally published on March 25, 2019.