A Life Everlasting (4 page)

I had gone for a sonogram on my twins. Now I was wrestling with philosophy and Thomas Aquinas and five fictional people tied up on a trolley line.

The night before the appointment to terminate Thomas, the atmosphere at home was heavy. Ross was drinking a single malt and doing something I had never seen before: crying. We didn't want to end Thomas's life, even if it was to protect Callum.

I wrote this in my journal:

“I hope God is watching over the doctors tomorrow and protects me and Baby B, and makes it as painless as possible for Baby A. We named Baby A Thomas Ethan. I looked it up today, and Thomas means ‘twin.'”

The next morning, we got up at 6
A.M
., and Ross carried our overnight bags to the car in the dark. We had booked a room at the Marriott on Pratt Street, across the street from the hospital, so I could rest after the procedure and be monitored the next day.

Once we'd checked in to the hospital and were waiting to be admitted, I texted Father John to let him know everything was still a go. He texted back that he was visiting a family in another part of the hospital but would meet us at the Advanced Maternal and Fetal Care department as soon as possible.

“Sarah Gray,” the nurse called.

We were led to an empty operating room, and I was given a gown. Ross sat on the chair next to the hospital bed as I changed and pulled myself onto the bed and lay down.

Dr. Baschat came in and placed the sonogram on my belly. He pressed harder, from more angles. He pressed and pressed, looking confused. Then he spoke:

“The baby has moved behind the placenta.”

“What?”

He sat back on the stool. “The location of your placenta is now blocking where I need to do the surgery.”

“So what does that mean?” It seemed like nothing was straightforward, not even this terrible procedure.

“Imagine the placenta is the size and shape of a paper plate. It needs to be here [he held out one hand] and now it's over here [he held out the other]. This is dangerous, because the placenta is highly vascularized, meaning it's filled with blood. This is good for the babies, but if I even nick it with my instrument, it will bleed.”

“So . . . what are we supposed to do?” I asked.

He paused. “
Why
do you want to do this?” he asked, hesitantly.

“We don't!” Ross and I both laughed. “We thought it was the safest thing for Baby B.”

“Well, that has changed. This is no longer safe for you. If you were my wife, I would not do this.”

And with that, the decision was taken out of our hands. Ross grabbed my hand and held on hard. The doctor excused himself, I put my clothes back on, and we left the exam room. Father John hadn't arrived yet. I was dizzy with relief. I sat in the lobby and texted him to cancel.

Ross and I stepped inside the elevator to the parking garage. As the doors closed, we clutched each other.

I would carry both babies to term.

O
nce the decision was made to carry both babies to term, Ross and I set about our lives as best we could. We began slowly acquiring hand-me-down baby items, and changing our guest room into a nursery. We were afraid to prepare too much, thinking that we might further jinx the pregnancy. Each time we referred to an event that might happen postbirth, we used a disclaimer: “If this works out, and if we really do have a baby, we should [
fill in the blank
].”

I even felt guilty opening a book of baby names. Although we had names chosen, Ross and I referred to the twins as Baby A and Baby B up until they were born, just out of superstition. We learned to assume nothing.

In addition to
sort of
preparing to have a baby join our home, emotionally I had to brace myself for the heartbreak of losing a child at the same time. I was going to need all the support I could get during this pregnancy. My job offered an employee-assistance program that included free counseling, so I started seeing a grief counselor, Sheila, when I was three months pregnant.

I saw Sheila once a week throughout the pregnancy (and for
a short time after). Sheila provided a safe place to put the feelings I'd accumulated during the previous seven days. She explained that one of the ways to understand grief was to think of it in stages—denial, anger, bargaining, depression, acceptance—and how it was normal to flip back and forth between emotions.

I told her about the moments when I felt guilty for looking forward to Callum's birth because it meant that Thomas's death would be near, and other moments when I felt guilty for dreading Thomas's death because it came alongside Callum's birth.

Also, I felt betrayed. I had thought that if I was a decent person and followed the rules, my life would go as expected. I graduated from high school and college, I had a good job, I paid my bills on time, I stayed out of trouble. What did I ever do to deserve this? Sheila recommended I read
When Bad Things Happen to Good People
, by Harold Kushner.

Even as I spilled my guts to Sheila every week, I didn't cry that much. It felt empowering to tell her about my feelings, and I remember laughing and feeling happy during our sessions. But there were also moments when I felt sorry for myself. One day I was driving home from a conference and I was stopped at a red light. There, on the corner, was a man standing with what appeared to be three-year-old twins, one tiny hand in each of his.
That's what I'm supposed to have
, I thought. I lost it.

But there was very little relief in crying. It felt unhealthy, like when you're lonely and you go back to an old boyfriend because he's available, not because he's good for you. It didn't help me grow; it just kept me treading water in the same stagnant pool of negative emotions and self-pity. I started to realize that none of us is really “supposed to have” anything. When we are born, we are not presented with a warranty guaranteeing that everything will be great, or with a list of things we are entitled to. Life is more random than that.

At my job, I worked with people with severe disabilities, whether due to a genetic condition, disease, or injuries from accidents or combat. Some of these people would never be able to live alone, drive a car, get married, or have a baby. Bad things happen to good people for no reason; I saw it every day.

Thanks to Sheila, I also started to see that I could feel both happy about Callum and sad about Thomas. I didn't have to pick one. Just knowing I had an appointment with her each week reassured me in a way, like knowing that someone will collect the garbage that's been piling up in front of your house every Monday morning.

Once I was showing, I no longer had a choice about keeping the pregnancy to myself. And so I joined the ranks of so many pregnant women before me, facing the enthusiastic friends and strangers wanting to share the joy of my having a baby and exclaiming things like, “You must be so excited!” Or asking, “Do you know what you're having?” Telling someone I was having one healthy boy and one boy who would die almost immediately would be awkward, even if it was the correct answer. Usually I just smiled and explained that we were having “a boy.”

I did share the truth sometimes, when it seemed appropriate. When I went on bed rest, I had to tell HR, and there were a few acquaintances who pressed me on why I was seeing doctors in inconvenient locations. I received an array of awkward responses: “You should just be happy that there's one,” or, conversely, “I'll say a prayer for you. Miracles happen.”

Not this time; no, not this time.

The truth was, the looks on people's faces when I told them made the whole experience even scarier for me. It was bad enough for Ross and me to go through this, but we could prop each other up as we went through this journey together, reassuring
ourselves that we'd be okay. And then we'd turn around and there would be friends and family crying and wringing their hands, and we'd have to calm
them
down, all the while convincing ourselves that our situation wasn't as dire as their reactions made it seem.

At other times, it really did feel that dire, like I was about to be eaten by a monster and everyone around me was shouting, “Look out! It's a monster! Run away!”

But I couldn't run away. I had to accept it and find a way to move on.

At the same time, I knew I had much to be grateful for. Yes, I was jealous of people who had a normal, happy pregnancy. But I also knew people who had it a hell of a lot worse than me. I had a loving family and husband, a comfortable home, supportive friends, a job I enjoyed, health insurance, clean water to drink via efficient indoor plumbing, and I was still pregnant with one healthy baby. That's more than some people ever have. I still had a lot to be grateful for.

I loved feeling the babies kick; it was like having two large guinea pigs wiggling around in the front pocket of a hoodie. Thomas was at the bottom and Callum was on top, so I could tell who was doing what. I had more sonograms—approximately one every week for twelve weeks—than most expectant women, who might have three or four during their entire pregnancy, so I had the opportunity to witness what the boys were up to regularly. We saw Callum suck his thumb. We could see the babies kick each other in the face. One night I felt a strange sensation that I hadn't experienced before, and then I laughed when I figured out it was a hiccup. How neat that the babies were big enough to do their own thing and hiccup.

In an effort to keep a little positivity and humor going, I
set up an email account for Callum so that he could “correspond” with his dad. It was silly and filled with inside jokes and horrible puns, but it was also a way to remind us that there was something wonderful on the way amid all of the sadness.

Date: Tue, 17 Nov 2009

Subject: Hello from Callum Gray

From: Callum

To: Ross

Hi Dad,

Mom made me my own email account. Who knows if I will ever need it, but she wanted to reserve it anyway. You can contact me through this email address, or I can be reached in my mom's belly pretty much anytime. LOL!

Love,

your son Callum

Date: Wed, 18 Nov 2009

From: Callum

To: Ross

Hi,

Hope you are having a good day at work. Make a lot of money so I can go to a decent day care please. Also please learn how to fold and unfold a stroller. I could hear what happened at Babies R Us and it was appaulling.

Love, Cal

On Wed, Nov 18, 2009 at 11:22 AM, Ross Gray wrote:

Very good. By the way, your spelling is “appaulling”—must take after your mother.

From: Callum

To: Ross

Sorry about the spelling. I am negative zero years old and the size of a pepper. What do you expect? Give me a freaking break!

In time, I became accustomed to our new normal, and I decided that if Thomas's death was inevitable, at least it could be productive. If our suffering helped mitigate the future suffering of just one other parent, then that was better than nothing. We had already registered for the Duke study and hoped to be able to contribute, but nothing was guaranteed. Though the thought of the study gave us a little hope, there were logistics: if something happened during the delivery, or the cord blood wasn't collected properly, or there was a snafu during shipping, the blood wouldn't be usable.

Duke also requested that Ross and I submit our own blood samples. At one of my checkups, I refused to leave the doctor's office until the nurse drew my blood.

“I don't think I'm allowed to since it wasn't requested by my doctor, and your insurance probably won't cover it.”

“It's fine, I'll pay for it myself.”

The nurse still hesitated, but eventually I prevailed, although I think she drew my blood only so that I would go away.

Finally, with every task completed, my hopes got a little higher that the cord blood donation would be a success.

In December, Dr. Khoury told me that when it was time to deliver, I should have a C-section. Since Thomas's skull structure was compromised, his skull could be crushed by the pressure of being pushed through the birth canal. And even if he was delivered successfully—he would be first, since he was lower—there was always a chance that Callum could get stuck on the way out and I'd need a C-section anyway, so I agreed.

The procedure was scheduled for Monday, March 22, when the babies would be at thirty-six weeks' gestation—a few weeks early as a precaution, since it would be very cramped in the womb and that could stress the babies. (I understand that this is standard for multiple pregnancies.)

I was scheduled to go on bed rest shortly before the December holidays, when the twins would be at twenty-four weeks' gestation. Dr. Khoury recommended bed rest for all women carrying two or more babies, since humans weren't actually designed to have more than one. Mammals who carry litters, like cats, walk on four legs, which distributes the weight of the litter properly, he said. But since humans walk on two, there's too much pressure on the cervix.

The fact that I would be confined to the house for twelve weeks meant I had to get all of my prebirth errands done before Christmas. One of the most difficult was the day I went to a maternity store to buy a dress for the funeral. When I told the saleswoman I needed something black and formal, she suggested something with sparkle: “It's for a holiday party, right?” I couldn't bring myself to tell her the truth, and mumbled something about a work function. How would I explain that this was for a funeral of a baby who was not born or dead yet? I took
a plain black dress into the fitting room. The woman looking back at me from the changing-room mirror exhaled and said,
Oh, God, this is hard
.

And just like that it was 2010. As the new year rolled around, I was home full-time, allowed to leave the house just once a week.

I loved it.

Thanks to my stockpile of sick leave, and the company's short-term-disability insurance plan, I received my full salary, so we didn't have to worry about money. Instead, I read books and I watched television. Friends said, “Aren't you bored?” No, not for a second. I so enjoyed being lazy that it was everything I could do to scramble to take a shower before 4
P.M
., when Ross came home from work.

I was so big by then that I didn't want anyone to take pictures of me anymore. I struggled to find clothes that would fit, but since I was in pajamas most days, I bought only one or two outfits that fit my swollen middle on those rare occasions when I went out.

At the end of January, when I was seven months along, my mom asked if we were going to look into organ donation.

“When I raised the subject of donating Thomas's body to science with the doctor, he didn't think it was an option,” I told her. I had been disappointed that the doctor said that, and I had thought that was that.

But Mom told me she had heard through the grapevine at work that a baby with anencephaly had died that week and that the baby's hepatic cells—liver cells—might be donated for transplant: “Apparently it's a new program. Do you want to look into it?”

“Sure,” I said. “Let's give it a try.”

My mom told me to call Becky Hill, the clinical-recovery
coordinator of the Washington Regional Transplant Community. WRTC is the federally funded organ-procurement organization—OPO for short—for the metro DC area. Founded in 1986, WRTC works with more than forty health-care institutions in DC, northern Virginia, and suburban Maryland. There are fifty-eight OPOs around the country, all federally funded and not for profit, from LiveOnNY, which services more than ninety hospitals in New York City and the surrounding counties, to Legacy of Life Hawai'i. Wherever you live, there's an OPO in your area. Physicians are asked to alert the local OPO when a patient has met clinical triggers that indicate a death is imminent (so the OPO can present the option of donation to the next of kin), but this does not always happen.

When I reached Becky Hill, I was struck right away by how sensitive and compassionate she was. She had obviously been through this process with families before, and it was a relief to talk to someone so experienced. She explained that Thomas's predicted size at birth would likely rule him out for donating to transplant, although there would be no way to know for sure until after he died. I told her about the liver-cell donation my mom had heard about, and she kindly said she'd look into it.

I imagined that when you died, all of your organs would be happily accepted, and I was surprised to learn that this is not the case. There are very specific criteria to donate organs. To donate for transplant, the donor needs to be free of communicable disease, and also must die in such a way that the donor's organs do not fail before they can be recovered—which usually means that the patient dies while connected to a ventilator. And the process that OPOs have to go through to make a donation happen is complex. After it is determined that a donation may be possible, the OPO presents the option of donation to the next of kin for authorization. (Most families don't make the first move, like I
did, but then most families probably don't have months to plan for an expected death.) Then they evaluate the medical suitability of the donor for organ transplant, which has one set of rules, or for tissue transplant, which has another set, or for research, which has—you guessed it—different guidelines again. Then the OPO reaches out to the United Network for Organ Sharing (UNOS), the nonprofit organization that maintains a list of transplant recipients all over the United States, or to research organizations like the National Disease Research Interchange (NDRI) or the International Institute for the Advancement of Medicine (IIAM), or even directly to local academic institutions. Then that organization coordinates the recovery with one or more surgical teams for different organs and tissues, and finally transports the donation to its destination—and all of it has to be done fast, within just a few hours of death. The OPO often provides grief support services as well, including quilt programs and annual donor recognition ceremonies. (This is a part of the program I would come to know very well.)