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Hard Labor

Susan Ali was determined to give birth to a severely handicapped baby. Her husband was determined to stop her

By Reshma Memon Yaqub
Sunday, April 10, 2005; Page W08

In a darkened room, Susan Ali strained to make sense of the grainy images on the sonogram screen next to her. She lay on her back, she recalls, her belly slathered with ultrasound gel as a bubbly sonogram technician led her on a guided tour of her 18-week-old baby-to-be.

"These are the toes," chirped the technician, freezing the frame on the foot of Susan and Saqib Ali's first baby. "This is the spine," the technician continued, as Susan, 32, and Saqib, 29, gazed in wonder at what looked like a string of pearls. The couple say they bombarded the technician with excited questions, which she cheerfully answered.

Susan and Saquib Ali with baby
Susan and Saquib Ali with baby
Susan and Saquib say goodbye to their newborn daughter, Leila Daine. (Family photo)

_____Online Q&A_____
Monday, 1 p.m. ET: When a sonogram revealed a severe birth defect in their daughter, Susan and Saqib Ali both knew what they had to do. Unfortunately, they didn't agree on what that was. The Alis will be online to field questions and comments.
Submit a Question Now

"Do you want to know the gender?" she asked. They did. And so did Susan's father, Bruce Simmons, who was there from Pennsylvania to share this moment with his daughter and son-in-law.

"It's a girl!" the technician announced, to a round of cheers. Susan squeezed Saqib's hand. The couple had already settled on a girl's name: Leila. Her middle name would be Daine, a tribute to Susan's mother, Diane, who had died suddenly a year earlier, two weeks after learning she had a brain tumor.

Leila Daine Ali. It was a name that Saqib knew he'd never tire of saying -- introducing her to the world, chastising her for trying to poke her pudgy toddler fingers into wall sockets, exclaiming over her good grades in school. It was a name he knew he would scrawl countless times on the "memo" line of his checkbook. "For clown at Leila's party." "For Leila's tuition." "For Leila's wedding dress."

"Let's look at the head," the sonogram technician continued. More grainy images appeared, but the technician abruptly stopped deciphering them. "The doctor will give you the rest of your results," the Alis remember her saying tersely. Puzzled by the sudden shift in the technician's mood, Susan and Saqib grew quiet, feeling embarrassed that they had taken up so much of her time with their excited banter.

They were quickly ushered from the sonogram room to meet with Alan Gerber, a partner of Susan's regular obstetrician. In his cramped Rockville office, Gerber laid Leila's ultrasound pictures out on a table, not far from the framed photos of his own smiling kids. "We have a serious problem," Gerber told them. "I don't know exactly what it is, but there is something very wrong with the baby's brain."

Susan slumped in her chair, mentally covering her ears, her father standing behind her. This must be some kind of mistake, she remembers thinking. Saqib had an entirely different reaction. His body went rigid, on high alert. He stood beside his wife's chair, listening with laserlike intensity, hurling one question after another at the doctor.

Part of Leila's brain appeared to be missing, Gerber explained. He didn't know what condition she had, but whatever it was, it looked bad. So bad, Saqib remembers the doctor saying, the Alis might want to consider termination. Gerber doesn't recall making a reference to termination and says that he probably didn't mention it because it's not the kind of thing he would raise so early on. He recommended that the Alis consult with a number of fetal specialists.

As the Alis walked out together, Susan says, they passed a nurse who wouldn't meet their eyes and who quickly backed up against the wall to let them by. Already, they were being treated like a funeral procession.

Because they'd met at the doctor's office, Susan and Saqib had to drive home separately. When they pulled into the driveway of their Gaithersburg home 10 minutes later, Susan asked her husband where the sonogram pictures were. She wanted to show them to her sister, Elizabeth. Saqib, who had interpreted Gerber's diagnosis as a death sentence for Leila, looked blankly at his wife and said, "I threw them away."

"What do you mean you threw them away?" Susan faltered.

Husband and wife stared at each other, baffled.

"I want them," Susan said.

"Why would you want them?" asked Saqib, in disbelief. "We're not having a baby."

"Why would you throw them away?" Susan replied, with muted horror. "That's our baby."

As it turned out, the pictures were crumpled up in a trash bag in Saqib's car. Susan walked outside, retrieved them, flattened down the folds and carried them into the house.

THE ROMANCE BETWEEN Susan Simmons and Saqib Ali started in an office cubicle and blossomed in the cafeteria of the computer networking firm where they both worked.

It was 1997, and Susan, a 25-year-old human resources assistant, was handing out tickets for an upcoming company picnic. Saqib, a 22-year-old software engineer, feigned interest in the picnic so he could strike up a conversation with the petite, sweet-faced blonde. Afterward, the two began bumping into each other accidentally-on-purpose in the cafeteria in the mornings. Breakfast dates evolved into lunch dates and, eventually, dinner.

Susan realized she was falling in love when she found herself baking cookies and dropping them off at Saqib's desk.

Saqib knew there was no turning back the night Susan invited him over to her apartment for dinner. Although Susan is a vegetarian who can't stand touching meat, she presented him with one of his favorite dishes -- roast chicken -- that she had cooked herself. Saqib knew that Susan could ill afford the extravagant dinner for two; she was on such a tight budget that she often economized by skipping meals.

The two were as opposite as could be. Saqib is tall, olive-skinned and athletic. Susan is tiny, fair-skinned and delicate. Saqib is Muslim, the son of immigrants born in India. Susan was raised in a conservative Christian family from a small town in Pennsylvania. He's a door-knocking community activist who hopes to run for public office someday; she's soft-spoken and cherishes her privacy. He's a perpetual pessimist, always managing expectations and planning for the worst; she's an eternal optimist who's always smiling.

Both sets of religious parents opposed the relationship. Susan's parents gently but repeatedly warned her that life with Saqib would be difficult. They feared that Saqib and Susan's differences would drive them apart. "What religion would your children be?" they asked.

Saqib's parents tried to convince him that he'd be better off with someone more like him. A few times, they tried to introduce him to women they considered more suitable. Susan remembers how awkward it was when she met Saqib's mother for the first time at a restaurant. "She didn't say much," Susan says. "She was very reserved. I could tell she was not happy."

Despite the pressure to end the relationship, Saqib and Susan were determined to be together. They eloped on a March afternoon in 1999, marrying during their lunch hour in a 10-minute Muslim ceremony at the Muslim Community Center in Silver Spring. Then they went back to work and returned to their separate homes. That night, over the phone, they broke the news to their families. Susan's parents were almost speechless; Saqib's parents were disbelieving.

Four months later, there was a Christian ceremony in Pennsylvania, with Susan's family and friends. Afterward, the Alis honeymooned in Hawaii and finally moved in together, not far from Saqib's parents in Gaithersburg. Eventually, both families accepted the union, and Susan and Saqib say they now enjoy good relationships with their extended family.

The Alis wanted children but not right away. They had reached a compromise on the question of religion. The children would be raised knowing about both faiths. But the practical details wouldn't be put to the test for a while. The plan was to revel in each other for five years before adding kids to the mix. The Alis ate out, went to the movies, traveled to Europe twice, hiked in parks throughout the region and spent lots of time with family and friends. Saqib continued to work as an engineer, but Susan had switched to working part time as a nanny.

Then came the death of Susan's mother at age 61. Susan grieved deeply. Saqib believed that having a baby would give Susan a reason to be happy again, to look toward the future. They were nearing their fifth anniversary anyway, and they agreed that it was the right time. Last May, while on a vacation in Turkey, the Alis learned that Susan was pregnant.

In anticipation of becoming a full-time mom, Susan quit her part-time job. They bought a bigger house, walking distance from Saqib's parents in Gaithersburg. It had a huge yard, so this baby, and the others to come, would have lots of space to frolic.

IT TOOK THE ALIS SEVERAL DAYS after that first sonogram to get an appointment with Sheri Hamersley, director of perinatology at Shady Grove Adventist Hospital. In her Rockville office, Hamersley did her own ultrasound on highly sophisticated machinery. Through the darkness, Leila's image blinked, its missing pieces telling a complicated story.

Hamersley and the Alis have distinctly different memories of that initial consultation. Hamersley confirmed that there was something seriously wrong with Leila's brain, eliminating Susan's hope that there had been an error. Hamersley says she told the Alis that at best Leila would be born severely debilitated. She says she warned Susan that by carrying Leila to term, she could be compromising her own health and taking chances with her ability to bear other children. One possible complication was "mirror syndrome," in which a mother becomes ill because the baby she is carrying is sick. Hamersley says she told the Alis that preterm labor was likely, which itself carried risks such as postpartum hemorrhaging, and surgical complications in the case of Caesarean section.

According to the Alis, Hamersley also warned that possible buildup of amniotic fluid in Susan's body could lead to breathing problems, lung damage or even a sudden fatal heart attack. Hamersley, however, denies that she outlined such dire consequences or gave the Alis the impression that Susan's life was in serious danger.

The Alis say they were urged by Hamersley to consider the toll Leila could take on their marriage. If she survived, Leila would be severely handicapped and require round-the-clock care. A child with needs this endless, Hamersley confirms she told them, would leave little room for anything else in their lives.

Saqib nodded his head in agreement as the doctor gave her warnings, but Susan pressed Hamersley with questions, trying in vain to get her to say something positive about Leila's prognosis.

Although Hamersley says she simply offered termination as an option, as any doctor in her place would, Susan and Saqib say they left her office with the impression that she considered termination the right choice in this case. The Alis say doctors told them that the legal limit for a routine abortion in Maryland is 24 weeks. The Alis had just more than a month to decide.

THERE WAS FINALLY A NAME for Leila's condition: holoprosencephaly (HPE). Her brain had failed to divide and separate into two distinct hemispheres. About one baby in 5,000 to 10,000 is born with HPE, according to the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations, a consortium of research hospitals and universities that includes the National Institutes of Health in Bethesda. But because most HPE pregnancies end in miscarriage, HPE may actually affect as many as 1 in 200 pregnancies. Of the fetuses that make it to delivery, very few survive past six months.

Children born with HPE are besieged by physical problems. Their eyes may not develop properly. They may even have just one eye, centered on their forehead. They may have no nose, or a flat, single-nostril nose, or a nose on their forehead. They may have a small head, excessive fluid in the brain, mental retardation, epilepsy and abnormalities in various organ systems.

The vast majority who survive beyond birth cannot eat or breathe on their own, or speak, walk or sit up. They can have frequent and severe seizures, which can wipe out everything that they have managed to learn. Perhaps the only saving grace: Kids with this affliction seem to smile and laugh often.

There are stories of people with HPE growing into adulthood in the rarest, mildest cases, says Nancy Clegg, holoprosencephaly project director for the Carter Centers, but their number is so tiny that researchers don't even track it. Despite physical challenges and mental delays that require others to assist them, some with HPE can walk, talk and even attend school.

It wasn't clear why Leila had developed HPE. It could have been a chromosomal defect, the doctors said. It could have been a result of a virus contracted by either Susan or the baby. It could have been caused by a blood clot in the brain, with the body's attempt to attack the clot going too far. Or it could have been a result of a genetically based problem that would make having other children risky for the Alis. Susan opted not to have amniocentesis, which could have provided more insight into the cause, because amnio can sometimes trigger a miscarriage.

While Leila's condition is relatively rare, the situation the Alis were confronted with isn't. About 3 percent of all babies in the United States are born with serious defects, from spina bifida to congenital heart disease, according to Jill Fonda, one of several genetic counselors who met with the Alis to help them understand Leila's prognosis and their options. The prenatal testing used to screen for birth defects -- including ultrasound, maternal serum samples and fetal MRI -- grows more sophisticated every year, making it possible to identify problematic pregnancies earlier, says genetic counselor Rhonda Schonberg, who also met with the Alis.

The number of children born with birth defects would be higher if abortion weren't an option. The vast majority of couples who discover that their baby is likely to have a serious birth defect choose to terminate the pregnancy, Fonda says. Only 20 percent of such couples choose to continue the pregnancy to term.

Whatever choice they make, most parents facing this decision experience severe emotional trauma, Schonberg says. They are overcome by grief and guilt. Sometimes they blame their partners for the birth defect. Sometimes they blame themselves.

Although most couples end up terminating the pregnancy, it doesn't mean they agreed on what to do. "We've seen some couples split up," says Schonberg. Because emotions run so high, she's even seen couples take opposing stances, only to flip-flop in their views and again be on opposite sides.

She gives couples an opportunity to explore their feelings and evaluate their options: "It's not even so much genetics as it is grief counseling."

WHEN THEY LEFT HAMERSLEY'S OFFICE, Saqib says, he'd reconciled himself to termination. In his mind, Leila was already lost, and he was not willing to risk losing Susan, too. But Susan had never believed that abortion was okay to end an imperfect or inconvenient pregnancy. To Susan, abortion was wrong unless a mother's life was clearly at risk. And she wasn't convinced that her life was.

Saqib knew Susan's view on abortion before they were married. "I had seen pro-life literature lying around her parents' house," he says. "I knew they were evangelical Christians." But Saqib didn't share Susan's fervent opposition to abortion; he was comfortable with it, he says, as a legal last resort. "In a case where there's a risk to the family," he says, "I think it's okay."

At Hamersley's suggestion, the Alis consulted Kenneth Rosenbaum, a clinical geneticist and director of the Center for Prenatal Evaluation at Children's National Medical Center. Rosenbaum says he didn't think Susan's life was in danger and tried to reassure Saqib on that front. He told the Alis that, in his opinion, she could continue the pregnancy without significant risk to her own health. The greatest risk to Susan would be if the baby died inside her, but he thought that was unlikely to happen. He also said there was no way of knowing exactly how bad off Leila would be, which only fueled Susan's hopefulness. Maybe Leila wouldn't be that bad off.

Now Saqib felt he had one doctor on his side, and Susan felt she had one on hers. Thus began the war of the Alis. From the start, it was clear that there would be no winner. Should they abort Leila? Should they carry her to term, only to watch her die? If Leila lived, could they provide the 24-hour care she might need? Should they let themselves get to know Leila, to love her and then mourn her? Or should they mourn her right away? Adding to their burden was the fact that they were moving into their new house -- the one they'd bought when they learned Susan was pregnant.

Saqib took a leave of absence from his engineering job. There was no room for anything in their lives, he says, except this decision.

Ever the engineer, Saqib made complex flow charts with arrows pointing to every possibility, from termination to stillbirth to years of feeding tubes and respirators. If this, then that. He followed Susan around the house, urging her to consider every outcome.

Susan begged him to leave her alone, she says. She needed time to think and absorb, to simply be with the situation. She escaped into the shower of their spacious, cream-colored bathroom, but he stood outside it, spouting information about HPE that he wanted her to process. When she tried to take a nap under her down-filled comforter, he waited by the queen-size bed as long as he could stand it -- usually a half-hour -- before waking her up to describe yet another scenario that needed to be charted.

He talked at her while she ate dinner, she says, and while they strolled around their neighborhood. If he found her watching television, he turned it off to talk some more. In the car, he wanted her to listen to him, not to music. Whenever he left the house, he'd immediately call her from his cell phone.

Saqib remembers pleading his case to Susan as they ate at California Pizza Kitchen in Montgomery Mall. Let's make this decision rationally, he urged his wife, based on Leila's prognosis and the risks to you.

To me, Saqib says he told Susan, this is like choosing whether to put a gun to Leila's head or a gun to both of your heads. If I have to choose whom to lose, I'd rather just lose the baby than both of you. Terminating is horrible, but it's quick and safe. And with the right counseling and the love between us, we might never be the same, but we could go on. Not terminating is more horrible, because it's filled with death and despair and separation and ruin. It's certain destruction for all of us.

You don't understand, Susan says she replied. You're not the one who has to go to the clinic and lie down and let them do this horrible thing to you.

Although Saqib accused Susan of hearing from the doctors only what she wanted to hear, Susan defended her desire to believe the best. "Doctors say that things could be bad, but they also say that things could be okay," she explained at the time. "Kids with HPE sometimes live into adulthood. Some of them can learn. They can communicate. And there could be no ill effect to my health from this pregnancy -- there's been none so far."

"It's not that I love Leila more than I love Saqib," she said as she and Saqib wrestled with what to do. "But she doesn't have a voice. I have to be the voice for her."

Their conversations often sounded like excerpts from an unwritten John Gray book: Mars and Venus Deal With Disaster. They loved each other, but they couldn't comprehend each other.

"Saqib thinks I am purposely putting my head in the sand," Susan said at the time. "But I'm not. I am shut down. He's a man; he has to decide everything right away. I would love to be an engineer and make a decision-tree. But all I'm thinking is: 'My baby is sick. My baby is sick.'"

"I don't understand this business about, 'I'm too emotional to make a decision,'" Saqib lamented. "Susan wants to rush into this crazy situation of having this baby, with absolutely no thought to how dangerous it is to all of us, what it will do to our lives. She has no idea what she's getting us into. She just looks at the sonogram pictures and sees a cute baby profile. She doesn't know what it means to have a truly sick child."

Though the Alis disagreed, they trod carefully around each other and hugged often. "It wasn't a heated screaming match," Susan says. "It was more a persistent state of unrest."

One day, when Saqib had gone into work, Susan's elderly great-aunt and uncle came over for lunch. Before leaving the house, Saqib had insisted that Susan call back one of the many doctors they were consulting. He wanted her to hear again that having this baby was not a good idea.

Susan tried to call, but couldn't get through, and turned her attention to her visiting relatives. When Saqib called at midday to check if Susan had called the doctor, he was upset to learn that she had not kept trying. He immediately drove home and insisted that she leave her guests, get in the car with him and go to the doctor's office without an appointment. Feeling besieged, Susan went with him. They waited in the doctor's office for three hours but never got to see him.

"Saqib was stalking me," Susan says now. "He was purposely keeping himself in a frenzied state and trying to get me that way, too."

"This was a life-and-death situation," Saqib counters. "I didn't understand how she could sit around having tea parties. This was urgent, but there was absolutely no urgency on her part. Because time was on her side. It was action by inaction."

Saqib felt that Susan's father and siblings were not-so-subtly influencing her, but Susan says that she requested their input and that it was not an intrusion. Saqib says Susan's family members would occasionally suggest another doctor for her to talk to, one whose values were more in line with their family's, one who didn't view Leila's life as dispensable.

"I wanted somebody who could separate the issues of my health and Leila's health," says Susan, "somebody who would tell me to terminate only if my health was really at risk, not because Leila wasn't worth the effort." She eventually settled on Michael Gallagher, a Rockville perinatologist with a caring manner, as her regular doctor.

Gallagher says the tension between the Alis was normal. "Moms and dads do things differently," he explains. "When a baby is sick, dads often get angry and feel powerless because they can't fix it. They try to distance themselves emotionally from the baby and want the mom to get over it. For moms, it's totally different. This is not just something that is happening to them. It's something that's happening in them."

Every time another doctor laid out the best- and worst-case scenarios, Saqib chose to believe the worst and Susan chose to believe the best. "It is as though our baby is a burning building," Susan said at the time. "Every time he [Saqib] turns around, I have gone back in."

THE ALIS, both religiously observant, say they spent much time praying. Saqib felt confident from his research into Islam that terminating the pregnancy was acceptable in this case, because Susan's health was at risk.

Susan eventually sought counsel from the pastors at her church, Gaithersburg Presbyterian. The couple laid out their situation to the Rev. Gregory Seckman in the church's small library. Saqib says he told the minister that the pregnancy was dangerous to Susan's health, possibly even to her life. Susan says she told him how badly she wanted to protect this baby and how confused she was by the seemingly conflicting information she was getting regarding her health risks.

Seckman says he listened and assured them that termination was justified given the risk to Susan and the poor prognosis for the baby. God would not be angry with them for making this impossible choice. "You are not doing this on a whim," Seckman says he told them. "There is no sin in it."

When they left the church, Saqib believed Susan would finally agree to an abortion. When she wouldn't, Saqib initiated another meeting at the church with Seckman and associate pastor Mary Beth Lawrence. This time the couple, obviously at odds, were counseled separately.

While Lawrence comforted Susan, Seckman had some strong advice for Saqib: The decision whether to terminate had to be Susan's. "If you pressure her to terminate, she will resent you forever," Saqib says the minister told him. "In the long run, you will be hurting yourself, because you will lose her."

WITH SUSAN 21 WEEKS PREGNANT, the Alis consulted yet another specialist, Charles Macri, director of maternal-fetal medicine at George Washington Medical Faculty Associates. He would be a tiebreaker of sorts between the pessimistic view the Alis felt Hamersley had painted of Susan's health risk and the seemingly rosier one that Rosenbaum had drawn. On the hour-long drive downtown for their 10 a.m. appointment, Susan promised Saqib that if Macri said her life was at risk, she would terminate the pregnancy.

At the appointment, Susan says, she asked Macri outright, "If I continue this pregnancy, is it the equivalent of me standing in front of a bus and daring it to hit me?" She says the doctor replied, "Potentially, yes." (After repeated calls and e-mails from this reporter, Macri promised to call to go over the Alis' description of their visit, but he didn't follow through.) Saqib says he could feel an enormous weight lifting from his shoulders. He and Susan could have a chance for a normal life again.

But, recounts Susan, Macri also said that she might remain perfectly healthy throughout her pregnancy. There was no way for him, or any doctor, to predict with certainty. Susan says she asked Macri whether most people in a situation like hers terminated because they were afraid of the ill effects on their own health or because they didn't want to bring a child that sick into the world. It's the latter, she says he replied. But Susan was willing to raise a child that sick.

After the appointment, Saqib turned to Susan for an answer. "I still need to think about it," she told him.

Saqib was livid. It finally dawned on him, he says, that Susan was never going to agree to an abortion. The doctors' warnings didn't matter. The assurances of her minister didn't matter. His wishes didn't matter.

The Alis rode home in silence. Saqib dropped her off at home and left again without a word. He drove, without an appointment, to Hamersley's office. He knew that if he called ahead, he would have to wait a few days. So he simply showed up and told the receptionist that he would not leave without seeing the doctor. He waited in her private office for three hours, fiddling with all the little toys and pens she kept on her desk, until all the day's patients had been seen.

When Hamersley joined him, Saqib told her what had happened since they'd last met, that more doctors and now even Susan's minister had sanctioned termination. Hamersley echoed what Seckman had told Saqib: Forcing Susan to abort the baby could cost him his marriage. This is not your decision alone, Hamersley says she told him. You can try to persuade Susan. But if you can't, you have to go along with what she decides and make the best of it.

She advised Saqib to briefly sequester Susan from anyone -- particularly any strongly antiabortion family members -- who might be advising her to continue the pregnancy. She suggested that the two of them have a few quiet days together, so that Susan could hear him, and hear her own heart, without outside influence.

At 5 p.m., Saqib walked up the stairs to the couple's bedroom. On the bed he saw a suitcase. Packed. With Susan's clothes. He looked at it, stunned, and walked downstairs to find his wife crying in the kitchen. She told Saqib that she was leaving for her father's house for a few days to get a break from Saqib's constant hounding.

Saqib couldn't let her leave. If she fell ill on the drive, or collapsed at her father's house, he wouldn't be able to get to her in time. Saqib took a long breath. Susan, he says he told her, stay here. Whatever you decide, I will support you. I may not agree with it, but I'll go along with it. Let's spend a few days being quiet about this. Let's not talk to each other about it, not talk to family members, not answer the phone, not check our e-mail. Take two days to decide, but decide on your own, without any outside influence, and consider what I think is the right decision. And then I'll support you.

Susan fell into his arms, relieved.

"It seemed like a weight had been lifted from her shoulders," Saqib says. He understood then that Susan wasn't going to change her mind, no matter how much time he gave her. "I knew that if she was actually considering termination, she'd still be miserable."

He says he finally squelched the urge to keep fighting. He gave in.

Now there were many other decisions for his engineer mind to grapple with, many more charts to make. What should the Alis do for Leila when she arrived? Would they put her on a respirator if she couldn't breathe? Would they put her on a feeding tube that she might never come off of? Would they care for her at home or

institutionalize her?

The Alis agreed to take a noninterventionist approach to Susan's pregnancy. If Leila could eat and breathe on her own, they would spend their lives meeting her every other need. But if she could not eat or breathe, they would not prolong her life with a respirator or a feeding tube.

This made sense to Susan, whose mother could have been kept alive on life support but wouldn't have wanted that.

Susan says she felt that it would be selfish to keep her daughter alive with machines. She and Saqib did not want to force her into a vegetative life. If she was meant to live, she would live surrounded by much love.

With their decision finally behind them, the Alis decided to prepare themselves for the realities of raising a profoundly disabled baby by visiting the neonatal intensive care unit at Children's National Medical Center in Washington. At the NICU, Susan was surrounded by sick babies and helpless, overwhelmed parents. She saw one particularly deformed baby hooked up to so much equipment that the infant needed a separate stretcher for the machinery. Seeing this baby, practically a pincushion with so many probes and needles, hit Susan hard, she says.

Later that day, she sat down to watch a Carter Center's video about kids with HPE, a video that Saqib had been nagging her to see for weeks. She cried as the screen flashed between images of birthday parties and grave sites. She could no longer make herself believe that everything would somehow, miraculously, be okay.

A ROUTINE VISIT TO GALLAGHER revealed a new problem. At 27 weeks, Leila had developed hydrops, a buildup of fluid in her body. The fluid in and around her lungs would prevent her from breathing at birth.

New prognosis: Regardless of any possible medical intervention, Leila would die either in Susan's body or shortly after birth. Distraught, Susan called Saqib from her car, and he raced home to meet her. She spent the rest of the day in bed crying.

"I realize life is not a fairy tale," Saqib said after hearing the news. But neither, he believed, should it be a story that reads in its entirety: Once upon a time. The end.

He was already worrying about what would happen if they tried to have another child after burying their daughter. They still didn't know if Leila's problems were likely to recur with another pregnancy.

"I cannot go through this again," Saqib declared. "I won't."

Susan and Saqib worked with Shady Grove hospital, which has an elaborate system to deal with high-risk pregnancies, to make a birth plan. The Alis wanted to make the few minutes of Leila's life as comfortable as possible. They decided that sedatives should be administered to the baby, via Susan and via the umbilical cord after birth, to relieve any pain.

So far the Alis had not bought anything for Leila, no bassinet, no clothes, no grave plot. But Susan and Saqib agreed that Leila should have something lovely to wear after her birth. They went shopping for a preemie-size outfit at Gymboree. Through a haze of tears, Saqib spotted a pink one-piece outfit, with snails on the front and ruffles at the sleeves. He and Susan bought matching pink socks and a hat that said "Princess."

In case these preemie clothes were too big, Susan's sister sewed a smaller dress and hat for Leila, using a pattern for doll's clothes.

IN HER SEVENTH MONTH, Susan used loose clothing and a strategically draped pashmina shawl to disguise the pregnancy as much as possible, because it was so hard to face the questions that a bulging belly naturally draws, especially from other pregnant women, who always wanted to chat and compare notes.

On Election Day, Susan says, she was introduced to a pregnant volunteer who was working at the polls alongside Saqib. The friendly woman wanted to discuss baby showers, whether to return to work after delivery, the challenge of finding the right pediatrician. Susan carefully straddled the line between evasive and unfriendly, until the other woman gave up.

Susan knew that once her baby was gone, talking to other mothers would be even more difficult. "Motherhood is a closed club," she said. "In my former job as a nanny, I noticed that when I took kids to the park, the mothers didn't want to talk to me . . . Either you're a mother or you're not."

Our language has a word for a woman who has lost a spouse: widow. We have words for someone who has lost her

parents -- motherless, fatherless, orphan. But if you've lost a child, there's no word for that. There's "childless," but that implies you've never had children. So what is a woman who has a miscarriage, a stillbirth, a dead baby?

Still a mother, Susan insisted. "I became a mother the moment I knew I was pregnant, the moment I started putting my child's well-being before mine. And I'll be one even when she's gone."

Susan talked about Leila all the time, trying to convey to Saqib that their baby was a real person, with a real personality.

"Leila's doing jumping jacks," Susan would announce when she lay down after a long day on her feet. When Saqib walked through the door one day, Susan felt Leila bouncing around. Another day, when Susan banged a spoon while cooking, Leila jumped. From her baby's movements, Susan could tell that walks soothed Leila but car rides agitated her.

Susan counted every kick, knowing each minute with Leila was borrowed. "I wish I could just keep her in my body," Susan said in her seventh month of pregnancy, curled up on her living room sofa, with Saqib sitting across from her. "Because I know when we go to the hospital, that will be the end."

By now, Susan was seeing Gallagher three times a week for sonograms. The doctor's sophisticated machinery could take photographs that were much clearer than typical ultrasound pictures. Every week, Susan asked Gallagher if he would print out a new picture for her to take home, and the kindly doctor complied, freezing the frame over and over in search of a clear shot of Leila's face.

"She has a lot of hair," Susan observed, showing off the photos. "She has Saqib's cheekbones but my chin. She's always wiggling her tongue. Once I saw her have this great, big, satisfying, long yawn, just like Saqib does."

Susan created a virtual shrine to Leila, with all the baby's sonogram pictures displayed on her dressing table. Saqib said at the time that he looked at Leila's photos as little as possible, because every time he did he felt more attached to her.

The baby's latest picture sat in a 4-x-6 wooden frame on Susan and Saqib's dresser. The frame was a Father's Day gift to Saqib from Susan's sister, before they had learned Leila's prognosis. The inscription scrolled around the frame reads: "Of all the things a man makes -- only his children last forever."

Although Susan updated the wooden frame with Leila's latest, clearest pictures, Saqib said he couldn't stand to look at it. He didn't ask Susan to put it away -- it was too important to her. But he wished she would.

"That frame mocks me every time I walk by it," Saqib said. "It laughs at me."

ON THE SATURDAY NIGHT of Thanksgiving weekend, Susan was preparing dinner for Saqib and her father, who was visiting. Suddenly, two months too soon, Susan's water broke. Unsure of what had just happened, Susan says she ran upstairs to phone her sister. Then she walked back down to the family room and told Saqib that she was in labor.

"Oh my God," he says he replied. "I haven't made any funeral arrangements yet."

An hour later, when the Alis arrived at Shady Grove hospital, Susan was having intense contractions. Her labor progressed quickly, then stalled.

Her sister was by Susan's side throughout the labor. When she wasn't holding Susan's hand, Elizabeth was hunched over, intently sewing another hat for Leila. She feared that the one she had already made would be too big.

Leila Daine Ali was born November 28, 2004, at 5:43 a.m. There was silence in the Shady Grove delivery room as physician A. Kimberly Iafolla handed the baby to Susan. Leila did not bellow or flail. She was very still, her arms limp by her sides, her eyes closed, her parents say. She didn't appear to be breathing, but she did have a heartbeat -- about 100 beats per minute. A good heartbeat for a newborn is 140 to 160.

Leila scored "1" on her Apgar test -- a 1-to-10 scale that measures the robustness of a newborn. One means barely clinging to life, Iafolla says. Zero means dead.

Occasionally, Leila made a gasping noise, trying to call air into her fluid-filled lungs. After 10 minutes, Iafolla checked Leila's heartbeat. It was 90.

Saqib and Susan huddled over their 3-pound 3-ounce daughter, kissing her, whispering to her, counting her toes, pointing out features that looked like Mom or Dad, the way all new parents do. Her full head of hair was wavy and dark, like Saqib's. Her feet looked like his. Her complexion was fair, like Susan's. Her fingers were long and delicate. Her heartbeat was 80.

The doctors and nurses handled her as little as possible, barely cleaning her up, so that Saqib and Susan could hold her as long as possible. Her heartbeat was 70.

Saqib says he climbed into the hospital bed with his wife and child. Over and over, Leila's parents told her that they loved her and carefully passed her back and forth between them. Saqib whispered the Muslim call to prayer in Leila's ear. Muslims receive their first call to prayer at birth, and their last at their funeral. Her heartbeat was 60.

A nurse slipped on Leila's handmade pink dress and hat, so the Alis could take pictures with her. "This dress will have to do for now," Susan says she whispered to her daughter. "But your next one will have wings." Her heartbeat was 50.

By 6:40 a.m., Leila's heartbeat had dropped to 40, and she started to feel cold in Saqib's arms. The doctor tried one last time to find a heartbeat, but there was none to be found. She called for a more sensitive pediatric stethoscope. Nothing. Susan says she shuddered as Iafolla looked up at the clock, knowing there could only be one reason for the doctor to do so. Iafolla pronounced, "Time of death: 6:50 a.m."

SUSAN LEFT SHADY GROVE at 9:30 a.m. the next day to attend her daughter's hastily arranged funeral. She stopped at home first to change. She just made it through the door before dissolving into Saqib's arms. The last time she'd passed through this front door, there had been a baby with her.

Saqib drove Susan to the Muslim Community Center in Silver Spring. Imam Faizul Khan, who had married the Alis five years ago, would lead their daughter's funeral prayer. Susan planned to have a memorial service at her church a few weeks later.

When Saqib and Susan entered the mosque, they saw Leila's tiny silvery coffin at the front of the prayer hall. It had been placed on a metal folding chair, atop a prayer rug. Wedged next to it was a teddy bear that the Alis had been saving for her.

During the funeral prayer, Saqib stood facing his daughter's coffin, with his father by his side. Susan, still weak from the delivery the day before, sat on a folding chair. They listened as the imam read the final prayer call to mark the end of Leila's life.

Afterward, Saqib picked up Leila's coffin and carried it to Susan. Together as parents and pallbearers, they carried the coffin to the hearse waiting outside.

The drive to nearby George Washington Memorial Cemetery took about 15 minutes. At the grave site, it was startling to see how small the hole in the ground was. It looked like something that a couple of kids might dig at the beach. Saqib lowered Leila's remains into the earth as Susan watched in silence from behind rose-colored sunglasses. Her arms tightened around her 5-year-old niece, Chrysanthe, who had slipped into her lap.

The imam recited from the Qur'an: "From God we come, and to God we shall return." Then Saqib picked up a shovel and began sliding dirt over his daughter's coffin. On top, he placed some flowers and Leila's teddy bear. The whole ceremony took just a few minutes. When it was over, no one appeared to know what to do. The dozens of mourners hugged Leila's parents and slowly left to return to work, to return to life.

Finally, Saqib and Susan were left alone, standing over their daughter's grave. They found it nearly impossible to leave, and they took turns reminding each other that it wasn't really Leila that they were leaving there. It was just her shell. From warm belly to cold ground in a mere 30 hours.

After some deliberation, Saqib and Susan decided to take the teddy bear back to Gaithersburg. It couldn't comfort Leila in her grave, but perhaps it could comfort them at home.

As they walked toward their car, Susan also carried a card that her 8-year-old nephew, Robert, had made on purple construction paper. On one side he had pasted a white cutout snowflake. On the other side he had scrawled: "Jesus remembers every snowflake."

GENETIC TESTING on blood drawn from Leila's umbilical cord revealed the root of the baby's problems: A significant portion of Leila's 13th chromosome was missing, as were smaller pieces of other chromosomes, Iafolla says. Some chromosomes had extra parts.

Iafolla told Saqib and Susan that further blood tests on both of them would reveal whether they are likely carriers for such a chromosomal problem, or whether this was a fluke and unlikely to recur. Susan went in immediately for her blood test and in early January learned that she was in the clear. Iafolla says that if Saqib's test turns out the same way, their chances of recurrence are less than 1 percent.

Saqib, however, has dragged his feet on getting his blood tested. "There's no point," he says. Should he and Susan have another problematic pregnancy, he believes, Susan would again refuse to terminate. And he's not willing to endure such trauma again. It doesn't matter to him how low the chances are the second time around; surely chances were low the first time around, too.

Saqib says he knows he can't control the outcome of a pregnancy. But what he can try to control is the onset of one. "Before there's a pregnancy, Susan and I are equals, and we make decisions together," he explains. "After a pregnancy, when a baby is born, we would be equals and make decisions together. But it's clear to me that during a pregnancy, I am not an equal parent with full rights. So those nine months are very disempowering. And I won't go through that again."

Saqib insists that the only way he would consider another pregnancy is via in vitro fertilization, so doctors could implant only eggs that have been tested and found free of serious defects. Susan is opposed to this painful and costly procedure unless the risk of another problematic pregnancy through natural conception is too high. Both would consider adoption, but neither prefers it.

Susan hasn't challenged Saqib's pronouncements about future pregnancies. She hopes he'll change his mind, she says, but she doesn't want to push him. He needs time to heal, and so does she. "It's still too raw for both of us," says Susan. "It's too early to think about next steps."

Susan doesn't believe they'll face another pregnancy like Leila's, but she acknowledges that if they did, she would make the same choices. She believes it was crucial to give Leila the best chance at life she could have and that they lost nothing and gained much by having her with them, even it was just for that one, precious, short but endless hour.

Other parents of babies born with HPE say much the same thing as Susan, according to Nancy Clegg of the Carter Centers. "In the six years I've been doing this, I have never had a parent tell me they regretted seeing their sick baby, holding her, telling her how much they love her and want to be with her," Clegg says. "Even if they just have an hour together, they get to cut a lock of hair, cuddle, take pictures, do what they needed to do for a lifetime."

Saqib says he feels conflicted about the hour he spent with his daughter. "I cherish that time I had with her, and I find myself constantly reliving it. But I also feel like a lot of pain and suffering could have been avoided. I worry that she may have suffered unduly due to our decisions. After all, she did suffocate to death.

"I'm thankful," he says, "that the whole harrowing situation came to a relatively quick and merciful ending."

THE ALIS PRAY FOR LEILA TOGETHER in their bedroom every night. They thank God for taking care of her and ask him to remind her that they are loving her from afar. Sometimes Susan prays, "Please give her a kiss from us."

They've poured some of their grief into starting a nonprofit organization, called Help Your Friends in Need (www.hyfin.org), that will be dedicated to aiding people with mental disabilities.

Susan has surrounded herself and Saqib with reminders of Leila. Her teddy bear. A scrapbook that contains her handprint and footprint. A lock of her hair. Her sonogram pictures. Photos taken right after her birth.

For Saqib's 30th birthday in January, Susan commissioned a pastel drawing of Leila from a portrait artist at a mall kiosk. When Saqib opened it, and its card from "Leila and Mommy," he was pleased, not pained. "This is a great drawing," he told his wife. "But she was even prettier in real life."

Saqib placed the portrait on the mantel above the fireplace, right next to the tiny, wood-framed sonogram picture that once mocked him. Now, he says, when he walks past the mantel, he sees his daughter looking back at him, smiling. And he wonders, he says, "what she would have thought of me as her father."

Reshma Memon Yaqub is a contributing editor for Parents magazine who lives in Gaithersburg. The Alis will be fielding questions and comments about this article Monday at 1 p.m. at washingtonpost.com/liveonline.


© 2005 The Washington Post Company