A Life Everlasting (3 page)

But it wasn't all dancing and chanting: we had some lovely quiet times, too, times when our love couldn't help but deepen. In Aviemore, a picturesque town two and a half hours north of Glasgow, we strolled around in the shadow of the impressive Cairngorm Mountains. Farther west we visited Glencoe, a beautiful glen in the Scottish Highlands and the site of a legendary clash of Scottish clans.

Ross having introduced me to the salient parts of his country, it was clear that we would take the next step. It was time for us both to head west, to my country, and a new life together. The start of the future had arrived.

Ross moved to Washington, DC, on October 10, 2005, and we got married five days later, paying a justice of the peace thirty dollars to marry us in a gazebo at the Carlyle House, a historic mansion in Alexandria built by John Carlyle, a Scot and one of the founders of the Commonwealth of Virginia.

Then we celebrated as we had begun: we went to Murphy's Pub for a drink.

Four years later, I stopped taking birth-control pills. Then, twins. Then, the sonogram.

After the diagnosis, Ross and I both immersed ourselves in research, digging up everything about acrania and anencephaly we could find on the Internet. (It was a bit of a shock the first time I put those words into Google and discovered there were heavy-metal bands called Acrania and Anencephalic. This told me that our baby's diagnosis was terrifying and repulsive, like something out of a horror movie.)

But I found help as well, from a website called anencephaly. info. Based out of Switzerland, the site was started in November 2000 by a mom named Monika Jaquier, shortly after she lost her infant daughter, Anouk, to the condition. Monika had found such comfort in talking to other families who had been through this experience that she wanted to help others the way she had been helped. This amazing resource—it's published in a number of languages and has been visited by millions of people around the world—is filled with photographs and stories from other moms and dads who had been down the road Ross and I were now traveling. It was a godsend.

One story in particular caught my eye. A woman named Allison Andrews, from Shreveport, Louisiana, also had twins, Sarah and Faith, and Faith had anencephaly. I emailed Allison the day after our diagnosis. She responded the same day, saying she would be happy to talk.

The diagnosis gave us something significant in common. I was grateful that a fellow human being, twelve hundred miles away, was willing to help me just because I would be going through the same thing. She signed off on her email, “Hang in there, girl.” My pen pal and I emailed back and forth a number of times, and arranged a phone call two weeks later. Ross listened in to my end of the conversation.

“I am so touched that you emailed me. I have been in your shoes, and I know exactly how you feel,” she said.

Hearing those words felt like when a cold shower finally turns warm. My emotions unclenched.

She warned me to expect awkward moments with friends and strangers, and mixed emotions—and she offered practical advice about the labor, and the funeral. We talked about things I would not dare ask anyone else in the world.

“Years before I ever had children, I heard about someone holding a child that died, and I remember thinking,
That's morbid and creepy
. Well, I ate my words!” she said. “Because when it's
your
child, you react however your heart feels. I held Faith for three hours after she passed away, and those hours were precious to me. The hardest part was handing her over to the nurse.”

Then she changed the subject, and this one brief exchange changed everything.

“Have you heard about the study at Duke?” Allison asked. She explained that researchers at Duke University were trying to find a cause or a cure for anencephaly. She and her husband, Charles, had contributed cord blood from their twins, along with their own blood, to help advance the study. Not quite realizing how important this would turn out to be, I nevertheless wrote down the words
Duke study
.

As we wrapped up our conversation, I felt a sense of comfort. I was not alone.

“You will never fully heal from it, but it gets better,” Allison said. “You will be okay. And call me any time you want to talk.”

After we hung up, I felt something I hadn't felt in a while: a smile on my face. I had a new friend.

The Duke Center for Human Genetics (now called the Duke Molecular Physiology Institute) was looking for families who were expecting a newborn diagnosed with anencephaly to participate in a study called “The Hereditary Basis of Neural Tube Defects.”The idea was to identify the genes that contribute to the development of the neural tube—the tube-shaped structure in embryos that becomes the brain and spinal cord—with the hopes of developing better preventions and treatments and possibly a cure. Participants were required to speak to a coordinator, complete a medical history, provide a blood sample, and arrange to provide a sample of cord blood from the baby—or, in the case of twins, from both babies. I sent an email to the study contact to see if we might be eligible.

“Are you sure they are identical twins, and not fraternal?” the coordinator, Heidi Cope, asked when we spoke on the phone. She sounded suspicious.

“Yes, that's what my doctor told me. For sure.”

“Well, if that is true, that is rare, and we would be very grateful for a sample like that.”

Suddenly, something that had caused us only pain seemed like it might have a higher purpose. I resolved to make this donation happen.

Having first spent several weeks getting used to the surprising news that we were having twins, we spent the next several weeks trying to accept the strange reality that we were going to have two babies but only one surviving child.

At thirteen weeks, we learned that the twins were boys. Ross reminded me of our deal from the first night we met:
I would choose names for our sons. I resolved that their first names would be simply ones I liked, and that their middle names would come from my brothers: Thomas Ethan for Baby A, and Callum Mark for Baby B. (It wasn't until Callum was three months old that we realized his name sounded like an appetizer at an Italian restaurant; we dressed him as calamari for his first Halloween.)

At fourteen weeks, I was referred to a new doctor, Alfred Khoury. Dr. Khoury was the medical director and president of the Inova Fairfax Hospital Medical Executive Committee. My mother worked at the Inova health-care system, and asked him personally to take care of me. “I will treat her like my own daughter,” he told my mom in an email.

Dr. Khoury is a white-haired, fatherly man with a straight-talking but kind and patient manner. He was not only the president of the high-risk maternal-fetal practice, but he was also the president of the Medical Executive Committee of Inova Fairfax Hospital. He is not a man who shies away from responsibilities, and I felt that I could trust him.

Dr. Khoury explained that a selective termination was not impossible, though we had been told it was. He knew of a place in Baltimore that specialized in complex twin pregnancies, and suggested that we meet with them to learn about our options.

And so at sixteen weeks we found ourselves talking to two specialists at the University of Maryland's Center for Maternal and Fetal Care in Baltimore: Dr. Christopher R. Harman, director of the Center for Advanced Fetal Care; and Dr. Ahmet Baschat, director of Maternal-Fetal Medicine, who would later become director of the Center for Fetal Therapy at Johns Hopkins.

I knew from reading about the Center for Advanced Fetal Care that they'd had a lot of experience with complicated, and
in some cases experimental, procedures; they'd been doing it for over thirty years. It seemed amazing to me what doctors were able to do to tiny fetuses in the womb. At the center they were able to perform surgeries in utero, including things like laser surgery, blood transfusions, fetal heart failure treatment—they could even insert a little balloon into a tiny baby's trachea to aid in lung growth. (The balloon is inserted at around twenty-six to twenty-nine weeks and then taken out at thirty-two weeks so that, once born, the baby can scream and breathe all on its own.)

On a video about the center on its website, Dr. Harman said something that stuck with me: “We're constantly reminded that pregnancy can turn out well, regardless of risk factors.”Well, here we were, with risk factors. We were desperate to hear what Drs. Harman and Baschat would say, especially if it included something about things “turning out well.”

First we met with Dr. Harman. He explained that Baby A, now known as Thomas, could pose a risk to Baby B, Callum. We learned that in some cases, mono-di twins share some blood vessels—a condition called twin-to-twin transfusion syndrome. That meant that my blood flowed to one of the babies, and then the blood flowed from that baby to the second baby rather than directly from me. If our twins had TTTS, and Thomas died in utero, which was a distinct possibility, it could kill Callum or leave him with cerebral palsy due to a loss of blood pressure. Not only was a selective termination possible; it was something that would protect Callum's brain function and ensure his survival. But as ever, it was our choice.

Dr. Harman explained how it would work. Cord occlusion, as it's called, would involve a metal tweezer-like instrument being inserted through my belly, where it would then grasp and cauterize the umbilical cord. This would cut off the blood supply to Thomas quickly and safely—safely for Callum,
that is. Thomas would die in my uterus and stay there until Callum was ready to be born a few months later. Thomas's remains would collapse, shrink, and calcify, though they, too, would be delivered when Callum was born.

But there was a big problem: The doctors couldn't determine whether the twins had TTTS until twenty-two weeks, but the ideal gestational age at which to do cord occlusion is
before
twenty weeks. Past twenty weeks, the diameter of the umbilical cord is larger, and the instrument that is required to grasp the cord therefore has to be much larger. This makes the procedure way riskier: it can cause preterm labor and rupture of membranes, so it's not recommended.

Ross and I agonized for days about whether to let nature take its course or to pursue a medical intervention that could improve the odds of having at least one healthy baby. My head was filled with questions: What if we don't terminate? And what if Thomas dies in utero and Callum ends up with cerebral palsy and is never able to walk, or drive, or work? Could I look Callum in the eye and tell him, “I could have done something that would have prevented your disability. But morally, it made me uncomfortable, and that is why you will never be able to walk. Sorry.”A selective termination seemed like the right thing to do—for Callum, at least—but these were incredibly difficult decisions to make.

Eventually, we made an appointment to have the procedure.

My parents were raised in large Catholic families, and I was wondering what my family might think about my having an abortion under these circumstances. When I brought it up with my mom, she suggested I talk to a priest: she thought that some priests would understand my situation and support our decision. And although I didn't feel that I needed the approval of a Catholic priest to do anything, I thought I would give it a try for
my mom's sake. Through a friend, my mom connected me with a priest called Father Frank. In the phone call I explained the medical procedure and asked if he would perform a blessing.

“You don't know for sure if they have TTTS? You don't know for sure that there is a threat, correct?”

“No one knows. We won't know until twenty-two weeks, but we have to have the procedure before twenty weeks. What I'm telling you is all the information the doctors have available.”

“If the twins are born next week, I can perform a baptism.”

“You don't understand,” I said, trying to remain as calm as possible, even though I could guess where this was going. “No one is being born next week. Thomas will die, and he will stay in there. His remains will come out in March with Callum.”

Father Frank was silent for a bit. Then he said, “I would not be able to do a blessing, no. But when your other son is born, I could perform his baptism.”

Thanks, but no thanks. Annoyed at myself for even giving this guy a chance, I thanked him for his time and said goodbye. I didn't need a priest to tell me my son is going to heaven. I thought,
Forget any religion that doesn't understand the medical situation
. Father Frank had demanded information that is not available in the real world. But more than that, this was not a hypothetical brainteaser—this was my real life. Lots of people were willing to help me—friends, doctors, acquaintances, and people I had just met on the Internet. Father Frank was not, and I didn't need to invite someone like that into my life if he was going to make my situation worse.

I told my mom that speaking to Father Frank had been a waste of my time, and worse—he had made me feel terrible. Undaunted, she asked me to try one more priest.

“Okay,” I said, “but this is the last one. Really, I'm done.”

Through another friend of a friend I met a priest called
Father John, and straightaway he surprised me. He listened intently to my story, and then he came up with a fully thought-out plan: because the procedure was being done with the intention of saving Callum's life, he would do the blessing. He quoted the Doctrine of Double Effect, attributed to Thomas Aquinas and colloquially also known as the Trolley Problem. Simply put, the doctrine argues that it's okay to do something that causes harm
as a side effect
if it ultimately causes something good to happen. (The Trolley Problem is an example of this “double effect”: there's a runaway trolley, and you have the chance to divert it away from five people tied up on the line [a good thing], but to do so would kill one person tied up on the other line [side effect].) Father John said that since cauterizing the blood vessels was being done to protect Callum, the termination of Thomas's life would be a side effect. If a miracle happened and the doctor was able to cauterize the cord, therefore protecting Callum and Thomas survived, we would be happy—not sad. This act of cauterizing the blood supply was therefore morally defensible, and he would perform the blessing.