A Life Everlasting (5 page)

In February, I was assigned a nurse, Kelly Gallo, from the Perinatal Concerns Program at Inova Fairfax Hospital Women's Center, where I would give birth to the babies. This is the same hospital where my brothers were born and the hospital system where my mom worked in the risk-management department. Inova Fairfax is considered one of the top hospitals in the Washington, DC, metro area, especially for gynecology and neonatology. They deliver around eleven hundred babies every year, and they have a level-four neonatal intensive-care unit—the level that can handle the most complex treatments and critically ill newborns.

Kelly Gallo's role was to help patients with complicated pregnancies and deliveries. She asked Ross and me to fill out a birth plan that would include instructions for Thomas's birth,
with stipulations such as no ventilation, no vaccinations, and no antibiotic gel for his eyes.

I told Kelly that, if possible, I'd like someone to do a blessing over Thomas when he was born. Since Ross and I didn't belong to a church, Kelly introduced us in November to Philip Brooks, the staff chaplain for the hospital. Immediately we found him to be a calming presence: he spoke quietly and seemed truly at peace. He said he'd be happy to do the blessing.

I also told Kelly that we were interested in organ, eye, and tissue donation. She had never had a case of an anencephalic newborn who donated before, so, like Becky before her, she said she would look into it. I had already begun to realize that this emphasis on donation was helping me focus my thoughts on something positive. A terrible thing was about to happen, but I was building meaning around it. This helped.

Kelly talked to a neonatologist at the hospital, who told her that for donation the baby would have to be at least at thirty-six weeks' gestation, and four pounds in weight, and even then only tissue and bone would be suitable for transplant. Another doctor told her that the baby would need to be seven pounds but could donate retinas and liver cells. I suggested to Kelly that she reach out to Becky at WRTC, who told her what she told me: there was no way to know for sure until the babies were born. In the meantime, I could complete consent forms, get a blood test, and complete a medical and social history interview in advance of the birth—all in order to expedite the process. Kelly added to our official birth plan the request to call WRTC at the time of Thomas's death.

I was surprised by some of the things they asked about for the history questionnaire. Debra Goldstein, a family-service specialist with WRTC, met with Ross and me after one of my appointments at the hospital to fill it out with us. Before she
began, she looked up from her clipboard and said, “These questions are personal in nature. They are the same kinds of questions you would answer if you were giving blood. Do you want to answer these in private, or do you want Ross to be here as well?” I said it was fine for Ross to be there, though I didn't quite realize the scope of what I'd be asked.

It started out easily enough, with questions about my job: Do you work near pollution or pesticide? Nope. General health: Do you smoke? Nope. Do you use intravenous drugs? Nu-ugh. And international travel: Have you ever traveled outside the USA? When?

Then the questions got kind of uncomfortable. Is Ross the father of this baby? Yup. How many sexual partners have you had? Have you ever had sexual contact with someone who was born in Africa? Hmm? The questions seemed just plain weird and beside the point, even though I understand now that they somehow related to the transmission of infectious disease.

Back then I was in a Zima-soaked college haze, I later joked with Ross. How was I supposed to know where all those people were born? This was pre-9/11; I was not checking passports.

Given everything, I supposed a few intrusive questions were hardly the worst thing we were going to face.

It was nearly time for Callum's arrival, and for Thomas's arrival and departure.

Ross called a funeral home to make advance arrangements.

“I'm so sorry, Mr. Gray. When was the death?” the funeral director asked.

“We don't know,” Ross said. “He's not even born yet.”

By March 10, 2010, we had to tell the hospital where to transport Thomas's body if he died there, as we expected he would. We found a children's cemetery in the DC suburbs, picked out a tiny coffin, and went over the list of mandatory
expenses—cold storage, hairdressing, makeup; and the optional ones—a viewing ceremony, a limo ride for the coffin to the gravesite, a tombstone. A burial.

We tentatively scheduled Thomas's funeral service for March 29, six days after his predicted combination-birth-and-death day.

Twelve days to go.

A
few weeks before our scheduled delivery date, Ross received a letter from the U.S. Citizenship and Immigration Services (USCIS) informing him that his citizenship ceremony had finally been scheduled for Monday, March 22—the same day as the scheduled C-section.

We had waited more than five years for this appointment, longer even than we had been trying to have a baby. Obtaining Ross's citizenship had been a complicated and frustrating process, even though we were married. What would we do?

It had been a huge relief to finally receive the notice to appear at the naturalization ceremony, where he would take the oath of allegiance, even if the timing was supremely unlucky.

I called Dr. Khoury and told him about the conflict.

“We'll have to reschedule your delivery,” Dr. Khoury said without hesitation. “Immigration will never reschedule. We'll do it on the twenty-third.” I imagined he'd had some personal experience with USCIS, so quick had been his reaction to our
news. Regardless, I was grateful for his flexibility, especially given how trying the whole immigration thing had been.

I had heard that immigration to America had been difficult enough before the events of 9/11, and after that it became even more so. I thought of the poem on the Statue of Liberty:

Give me your tired, your poor,

Your huddled masses yearning to breathe free,

The wretched refuse of your teeming shore.

Send these, the homeless, tempest-tost to me,

I lift my lamp beside the golden door!

What an outdated relic those sentiments proved to be, at least for us.

Ross wasn't tired or poor when he arrived in the United States, but he would be by the time the USCIS was done with him. It took five years and about four thousand dollars in fees and a lawyer's help. Ross had to spend our first six months of marriage unemployed; he was not allowed to leave the country, but he was not allowed to work, either, even though he had a job waiting for him. Ross had a bachelor's degree in civil engineering and had been employed at an engineering firm in Glasgow. His company, Halcrow, coincidentally had a U.S. office near Washington, DC, so when he asked about the chances of moving to the DC office, he was delighted to find out that he would have a job waiting for him if he could work out his own visa. In fact, Halcrow merely wanted to know when he could start.

No such luck. I was embarrassed by how unwelcoming my country was to my beloved. Engaging with the USCIS was like dealing with the government of a third-world country. They were understaffed, and it showed.

The visa he eventually acquired was the K-1 visa, known as
the “fiancé visa.” While he still lived in Scotland, he took a day off work and travel four hundred miles to the U.S. embassy in London to complete the required medical tests, including an HIV test, and a chest X-ray to prove he didn't have tuberculosis. It seemed bizarre and inhumane to not let someone move just because he has a disease, and well-known, treatable ones at that. We submitted photos of ourselves together and included receipts for all the phone cards we used to call each other. We were both required to write a letter explaining why we wanted to get married.

Once he moved to the United States and we were married, we had to provide further proof that we were a couple, including the details of our joint bank account, our shared finances, bills we paid together—you name it. We completed hundreds of pages of confusing forms, and then there were those thousands of dollars in government and lawyer fees. Ross completed a civics test with questions about American history and the American political system.

While all this was going on, we attended a wedding in Toronto. On the drive back, we were held at the border. Ross's visa had expired, and, the USCIS explained, there was a backlog in paperwork; so instead of issuing him a new visa, they provided a letter that would serve as his visa until the actual document arrived. The immigration agents in Buffalo, New York, didn't seem to be buying it, and asked us to step out of the car. We were forced to cool our heels for an hour while they figured out whether the letter was legit. I felt uncomfortable being treated as a second-class citizen, and it was unnerving to contemplate that my husband might not be allowed back into the United States. That ordeal had been a sharp reminder of what a jam I could end up in by cosigning a mortgage and having a family with someone who could be deported.

I wasn't able to attend Ross's ceremony because I was on bedrest, but my dad and my brothers, Mark and Ethan, did, and they all filled me in afterward.

About one hundred soon-to-be Americans and their family members met at the U.S. District Court for the District of Columbia. Most were dressed up, and it was a festive atmosphere, with balloons and American flags.

The future citizens stood, repeated after the judge, and became Americans. Afterward there were cookies, fruit, and soda, and the judge mingled with and congratulated the new citizens.

Ross had become an American on a Monday, and now, on the following day, he was about to become a father. He'd had quite a start to his week.

That Tuesday morning—March 23, 2010—I was surprised to find myself both happy and at peace. I was ready to stop being pregnant and be a mom.
Let's get this show on the road
, I thought. Ross seemed excited, too. When it came to facing Thomas's death, we were as ready as we were ever going to be.

After all the phone conversations with Becky Hill from WRTC to discuss donation possibilities and logistics, I finally met her in person when she came to see me that morning in the prep room. She looked to be in her late twenties or early thirties, and she had long, blond hair. She was holding a beige knitted blanket in her hands.

“It's nice to meet you!” she said with a friendly smile. “Our volunteers knit these comfort shawls, and we wanted to give this one to you.”

“Thanks so much,” I said. “I'm going to use this right now because it's kinda cold in here.” Already in a thin hospital gown, I covered my bare legs with the soft, warm fabric.

Although I didn't realize it at the time, Becky and the
WRTC team had done some prep work that was unusual. Normally, WRTC arranges donations for adults and children. A baby who had not even been born yet was a new one for them. This presented some unique challenges. For starters, they were used to gathering data about a donor in the controlled environment of a hospital; trying to gather that information while the donor was still in utero was uncharted territory.

As she explained it to me, there are three general categories of donation: The first is for organ donation for transplant such as heart, lungs, liver, kidney and pancreas. Organ donation for transplant has the most stringent criteria and it changes as medical advances come along. Since organs need oxygen to function and people stop breathing after they die, typically the donor needs to have help from some kind of machine that can circulate oxygen through their body at the time of death. Organs are typically removed and on their way to be transplanted within an hour of the cessation of oxygen to the body.

The second category is for tissue donation for transplant (corneas, skin, bone, heart valves, tendons, ligaments, nerve tissue, blood vessels, etc.). Tissues do not need to be transplanted as quickly as organs. In fact, some tissues, such as heart valves, can be frozen for years.

Third is donation for research or therapy. If the organ, eye, or tissue is determined to be unsuitable for transplant (due to a lack of oxygen, positive test for a disease, having an unusual anatomical structure, or a variety of other reasons), it could be donated for medical or scientific research or a variety of therapies.

As we waited in the prep room, Becky told me that the organization that WRTC had in mind for Thomas's liver donation was Cytonet, a biomedical company in Durham, North Carolina. Cytonet had developed a protocol for transplanting liver cells into children with malfunctioning livers who are
too small to receive a full organ transplant. The liver cells are injected as a bridge therapy to help the malfunctioning liver do its job until the children are big enough to go on the organ transplant list. Without this novel therapy, most of these children would die. The Cytonet option was the first opportunity WRTC had heard about for anencephalic infants, but, this, too, presented a new challenge. The recovery method was an unexplored area that fell between donation for transplant and donation for therapy: the liver had to be recovered within a certain time frame to remain viable, but less quickly than it would have to be for an organ transplant.

Cytonet required that donated livers be free from communicable disease, so WRTC needed a sample of my blood on the day of the birth to make sure I didn't have a disease like HIV or hepatitis that I might pass on to Thomas, which would rule out a donation to Cytonet. (Though diseased tissue is normally not suitable for transplant, it is extremely valuable for disease-specific research. In addition, after the Hope Act of 2015, a donor who is HIV-positive can donate organs for transplant to recipients who are already HIV-positive.)

On a good day, nurses can't find my veins. Because per C-section surgery rules I had not eaten or had anything to drink since midnight, I was dehydrated, and this made my veins collapse. The nurse was really struggling to insert a needle into the top of my hand, and was apologizing the whole time. She was trying to be gentle, but after numerous failed attempts my hand swelled up like a bear paw, and she left to find a colleague to help.

Ross was getting woozy.

“You don't have to do this,” Becky said to me. “It's up to you.”

“Let's forget it,” Ross said. “It's not going to happen.”

I looked at Becky. “But if I don't do it, we can't donate, right?”

She looked at the floor. “You don't have to donate.”

“I want to donate. After all the work we have done? We'll get some blood.”

The nurse came back with a doctor, the vein-finding ringer. Eventually, success! A vein.

“I'm sorry it took so long,” Becky said, gathering up the tubes that now held my blood. “I'm going to bring this to the office now. I'll talk to you soon. Good luck!”

“Thank you,” I said.

“No, thank
you
,” she said.

Next, I was led to the operating room while Ross stayed behind. I was carrying a bag filled with test tubes that Duke had sent. “These are for collecting the cord blood. Where should I put them?” I asked.

A nurse put the bag on a table near the back wall.

“There are instructions in here, too.”

“They know how to do it,” she said kindly.

Even though this was now so important to me, I was still concerned that I was imposing. I understand that medical professionals care about one thing—the health and survival of their patient—and in this case, their job was to perform a complex surgery in a way that was safe for the twins and me. Asking them to collect cord blood for some study hundreds of miles away felt like asking a DC Metrobus driver to pull over at Starbucks and wait for me while I picked up my breakfast.

I'd never had surgery, so I didn't know what to expect. I'd pictured a small room with a window, like a normal hospital room, with a few hints of baby stuff like a stuffed animal here and there. Instead, the windowless room was at least three times the size of a normal hospital room. There were metal tables lining the walls, another room with two-way mirrors in the corner, and large medical equipment hanging from the ceiling. I had imagined that
the bed would be the largest thing in the room, but in fact it was dwarfed by all the high-tech gizmos. The bed itself looked like nothing so much as a crucifix with a board on which to rest each outstretched arm. The whole thing was clean and sterile, with not a stuffed animal in sight; in fact, it had all the warmth and charm of mission control for a space flight. But if that's what they needed for a safe delivery, I could do without the stuffed animals. Looking around, I quickly realized that this surgery was no joke.

There were already a bunch of people quietly bustling about. One of them, a young woman in a white jacket, said, “I am a resident here, and I would like to observe the birth. Is this okay with you?”

“Sure, that's fine. Did they tell you about the twins?”

“Yes,” she said.

I was glad to have one more medical professional learn something and witness what I imagined was an unusual case. There was no avoiding this bizarre situation, but maybe someone could learn from it. This young student at the beginning of her career added an element of hope for the future.

There must have been fifteen people I had never met already there, all dressed in scrubs, quietly going about their preparations. One of them, a man with an Eastern European accent, told me to bend over the operating table “like a rainbow” so he could administer an epidural. He told me to stay completely still while he inserted the long needle into my back. If I moved, I could paralyze myself. When I felt the sting of the needle pierce my skin, I let out a high-pitched “Ahhhhh!”

He told me I should try out for
American Idol
.

I had been afraid, and I was grateful for this silly comment that distracted me and put me at ease.

My legs started to feel tingly and warm.

“Hurry up! Get on the table!”

“Right now? Is this where I'm having the babies?” There was no reason I should know how these things go, of course, but nevertheless the surprises kept coming.

Dr. Khoury was stuck in traffic, someone said, so in the meantime they put a privacy sheet up so I couldn't see what was happening at the business end of the table. I felt someone lift my robe and, though I was numb to pain, I could feel the vibration of the electric razor as they begin to shave me. Given all the people in the room, I did wonder if they could all see me naked. With Ross confined to the waiting area until just before the doctor made the incision, I felt alone and lost, like I was at a party where I didn't know anyone.