Not My Daughter

Chapter 20

Susan began Monday with mixed feelings. On one hand, she was not looking forward to the sonogram. Sonograms made babies real. She wanted Lily's to stay abstract for a while longer, at least until she got the rest of her own life straightened out.

But she loved Lily, and since Lily was beside herself with excitement, Susan couldn't help but catch some of her mood. In Lily's mind, it was like the first day of kindergarten or the night before Christmas. The hospital where she had her appointment was a thirty-minute drive from Zaganack, and she chatted the whole way.

"They take pictures during the sonogram, did you know that, Mom? We get to take them home-and I know she'll look Martian, but she's four and a half inches long now. I'm going to frame the pictures. I mean, I am going to take pictures constantly once this baby's born, but these will be the very first. You waited to learn the sex."

"Lots of parents still choose to wait."

"Not me. I want to know for sure. Actually, they may not be able to tell me today. It depends on the baby's position. Thank goodness I'm this far along." She crinkled her nose. "I wouldn't like having the sonogram done transvaginally-I mean, I'd be okay with it, but transabdominal is more comfortable, and I think they can see more this way because they can move the probe more to get a better view. Doesn't that make sense, Mom? I mean, it'll be so much easier when the baby gets bigger. Mary Kate wanted to come, but I told her no. This time's just for you and me. That's how it should be, don't you think?"

You should be twenty-five and married, and your husband should be the one driving you, Susan thought. But she was coming to accept that these things weren't to be. The baby was something else. Bracing for the reality of it, she was feeling flutters in her own stomach when the sonogram began. Lily lay on a table with the small swell of her abdomen exposed. The technician squirted a gel, spread it with the transducer, and images soon appeared on the screen. Reaching for Susan's hand, Lily drew her close to the head of the table, but the images were hard to decipher. The technician was patient, explaining what she saw, and suddenly Lily gasped.

"Omigod. Look, Mom!"

Susan felt the same amazement. Even in a grainy image, the blotch on the screen had become a baby. Moving her probe, the tech was able to show them its profile-eyes, nose, mouth-primitive but distinct-and familiar, though Susan would have been hard-pressed to say which one feature was Lily's. The tech took a picture, adjusted her equipment, and pointed out arms and legs. But the second Susan knew she was lost was when she saw the pulsing point of a beating heart.

This was why she hadn't wanted to hear the heartbeat before; a heartbeat meant life. She remembered the first time she'd heard it when she was carrying Lily. It had been the moment Susan truly realized she was a mother.

And now? In an instant, Susan's perspective changed. It was no longer about her teenage daughter being pregnant. Now it was about her daughter's child-her own grandchild-a very real human being. Susan felt pure awe.

The technician fiddled with the transducer, moved it higher, then to the left. She made a puzzled sound, to which Lily asked a worried, "Can you not see the sex?"

The woman repositioned the transducer. Susan kept her eyes on the monitor but saw nothing recognizable.

"You sure you want to know?" the woman asked, and when Lily cried an excited yes, she said, "See this?" She pointed to the screen. Susan squinted. "If I were to guess, I'd say you have a little boy in here."

A little boy. Not what Lily wanted. Susan looked at her daughter, and yes, those were tears in the girl's eyes, a brief "Oh" of disappointment-then a brilliant smile.

"A boy," she said, testing the word. "That's okay, that's okay. Mary Kate will die. She wanted a boy until Jess and I bugged her so much she changed her mind. So much for having another generation of girls."

If the remarks registered with the technician, she didn't comment. She was moving the transducer again, first one way, pressing a little, then another, and all the while her eyes were on the screen. She was looking for something.

"What do you see?" Susan finally asked.

"I'm not sure."

Lily picked up on Susan's concern. "Is something wrong?"

"I'm just trying to get another view," the tech said, but her voice was hesitant.

"You're not sure it's a boy?"

Susan didn't think it was that. Her gut told her that the tech saw something else. "What is it?" she asked.

Setting the transducer aside, the woman gave them a quick smile. "It's likely just me. My eye isn't trained well enough. Let me get the radiologist. He'll know."

As soon as the woman was gone, Lily turned large eyes on Susan. "She's worried, but how can something be wrong? I mean, I'm young, I'm healthy, I feel great."

Susan held her hand. "Everything's probably fine, but the reason they do these sonograms is to detect even the smallest little thing."

"Like what?"

"You'd know that more than me, sweetie. You're the one who's done all this research."

"Down syndrome. But there are serious calculations involved, and she wasn't doing any, so maybe she saw something structural, but everything that was supposed to be there was there, wasn't it?"

"Absolutely," Susan said. "I'm sure it's nothing."

"What if it isn't?"

"If it isn't, we'll deal."

The technician returned with the radiologist, who introduced himself, then said calmly, "Let's take a look," and picked up the transducer. Susan studied the monitor, trying to decipher something, but all she could identify was that little heart beating what she thought was a totally normal beat.

Finally, the radiologist pointed at the screen. "This is the baby's chest. I see the intestines," he moved the tip of a pencil, "and the kidneys, but they look to be outside the abdominal cavity."

Lily's hand started to tremble. Holding it tighter, Susan asked, "What does that mean?"

He moved the transducer again, but Susan couldn't see anything this time either. When he paused, he didn't look relieved. "This isn't uncommon. It happens once in about every twenty-five hundred births. We call it a congenital diaphragmatic hernia."

"Please explain," Susan said, knowing Lily would ask if she'd been able to speak.

"The diaphragm is a muscle between the abdominal cavity and the chest. It forms at the eight-week point, but occasionally it has a hole. When that happens, organs that would normally be in the abdominal cavity are not."

"His organs are outside his body?" Lily wailed.

"No. They're inside. They're just in the chest cavity, not the abdomen."

"What does that mean?"

"It means that there's less room for the lungs to form, so one or both may not fully develop."

"My baby will die?"

"No. There are different severities of CDH, and even for the most severe, the survival rate is continually getting better. But I don't know for sure that this is CDH. We'll know more in a few weeks."

"Weeks?" If there was a problem, Susan wanted to act.

The doctor remained calm. "The baby's in no immediate danger. Right now, it breathes through the placenta. Typically, we monitor the fetus to confirm its condition and see if it worsens."

Lily started to cry.

Holding her, Susan said, "We need to know more. If the baby does have this, how is it treated?"

"Surgery after birth. Depending on the severity as the fetus grows, prenatal surgery is even an option." He spoke to Lily now. "Like I said, your baby is in no imminent danger. We'll send the sonogram to your OB." He checked the file. "She'll take it from there."

As soon as they reached the car, Susan called Dr. Brant, who suggested they come in on the way home. Lily was silent, pale, and frightened. The best Susan could do during the drive was to try to reassure her.

"Don't assume the worst, sweetie. The danger of early tests is that they can be wrong. It may be nothing."

But Dr. Brant was concerned enough after talking with the radiologist to refer Lily to a high-risk obstetrician. The first appointment they could get was for the next morning, which meant a long night of worry. Mary Kate and Jess slept over, and Lily had told enough other friends she was having the sonogram that the phone wasn't quiet for long. When Lily couldn't bear talking about it anymore, the two other girls helped. Lily's sleeping. Everything's great. It's a boy!

Long after the girls turned off the lights, Susan was googling congenital diaphragmatic hernia, reading different accounts, alternately encouraged and discouraged. It was a case of a little information being dangerous, especially once her imagination kicked in. And she didn't know that the baby had this at all.

That was why she didn't call Rick. She had never called when Lily got a rash as a baby, not until the doctor knew what it was. If it turned out to be a heat rash, she didn't call him at all. That was what she wanted this scare to be-like a heat rash, gone by morning.

Jane LaBreia, the new doctor, was younger than Eileen Brant and had trained at Mass General. A small woman with short blond hair and a quiet manner, she was wonderful with Lily, for which Susan loved her. They had an instant rapport.

After examining Lily and studying the sonogram, she said, "I agree with the diagnosis. What I see in these pictures is consistent with CDH, but there isn't much we can do right now. At week twenty, we'll do a level three ultrasound, which is a more in-depth version of what you had yesterday. If the diagnosis stands, it will tell us whether the baby's condition is getting worse. If we need an even better picture, we'll do an MRI." Turning to Lily, she explained, "When a fetus has CDH, we worry first about the lungs being too small to sustain breathing, and second about the heart. Right now, your baby's heart sounds strong and perfectly normal. We want to keep it that way."

"How do you do that?" Lily asked in a weak voice.

"By monitoring it. If we hear stress and see the CDH worsening, we have choices."

"What choices?"

"We can do nothing and let nature take its course. Or we can operate."

Let nature take its course. Susan knew that meant letting the baby die at birth, but of course there was another option. The pregnancy could be terminated now.

Mercifully, Lily had glommed on to the doctor's last option. "You'd operate before the baby's born?"

"We would. There are new, minimally invasive procedures. The results have been stunning."

"But there's a risk."

"Any surgery involves risk, but that's what pediatric specialists are for."

"My baby could still die."

"The chances of that are less likely today than they were five years ago. You should have a strong, healthy baby."

Lily looked like she wanted to believe her but couldn't quite.

"Really," the doctor insisted gently and said, "I recommend amniocentesis. The more information we have, the better. If we rule out other possible problems, we can concentrate on the CDH. Amnio entails a small risk, though, so perhaps you'd like to think about it."

Susan knew that the doctor's request wasn't an idle one. More than one of the articles she had read mentioned that a fetus with CDH often had other abnormalities.

With Lily bewildered and silent, Susan said, "How soon can it be done?"

Lily was grief-stricken. The plan had been to get pregnant, breeze through nine months like she'd breezed through AP bio, and pop out a healthy baby. Other people had physical problems, but not her, because her mother hadn't. Weren't these things hereditary?

But the doctor was telling them they had to wait and see, her baby may or may not need surgery, may or may not be normal, may or may not live-and her mother had gone ahead and scheduled a test Lily did not want to take.

She let Susan hold her hand until they left the building, but her resentment was building. Stopping halfway to the parking lot, she snatched her hand free and turned on Susan. "How could you agree to that, Mom? Amniocentesis can lead to miscarriage, which would be fine with you-you don't want this baby-but I do, and I don't want amniocentesis." When Susan reached for her, she stepped back. "This is my baby. I told you that. I make the decisions."

"There's a reason why the doctor wants it, Lily."

"To rule out other problems, but what other problems could there be? Isn't this one bad enough?" Internal organs in the wrong place? It was freaking her out. "I don't want amniocentesis. How could you schedule it without asking me? I was sitting right there!"

"Lily. I looked at you. You had a chance to speak but didn't."

"I couldn't. I was too upset. Don't you think this is a shock, Mom?"

"Absolutely," Susan said with annoying calm, pulling her aside for another family to pass, "but you're still my child, and I made the best decision I could. Amniocentesis will tell us something."

That was what frightened Lily. Her voice shook. "What if it tells us my baby is really sick?" Her eyes filled with tears. "I read online, too, Mom. What if it has other, really awful things wrong with it? What'll I do then?" Suddenly sobbing, she let Susan hold her. She was terrified.

Even when she stopped crying, her mother didn't let go. In a calm voice that Lily hated but desperately needed to hear, Susan said, "We'll deal, sweetie. We'll deal."

Lily wanted to believe her. But she wasn't a child, she was having a child. She had to be realistic. "What if it's so awful that my baby won't be able to live?"

Smiling gently, her mother brushed tears from her cheeks. "Let's take it one step at a time. If you don't want the amnio, we'll cancel it."

That put the burden on her. Which was what Lily wanted. Except that her mother had really, really good judgment. "You think we should do it."

"Yes. The risk is less at your age. It'll be even less if we use someone who does amnio all the time. Good news will definitely make the waiting easier."

"What if it's bad news?"

"We'll deal."

"You keep saying that, but it could mean anything," Lily said, tearing up again. "Not in a million years could I terminate this pregnancy. This is my child. I don't care what's wrong with him. Miracles happen, don't they?"

"They do-but why are you expecting the worst? We have never lived like pessimists."

"We've never faced something like this. Why did this happen? What did I do wrong? Was it deciding to have a baby without telling the father? Without telling you? I mean, people my age have babies all the time, and they're healthy. Was it sports? I was playing field hockey while his diaphragm was forming. Maybe I ran too hard, or fell and the impact tore something."

Even before she finished speaking, Susan was shaking her head. "I don't think that's how it happens."

"Then how did it?" Lily asked. She needed an explanation.

"It was a quirk of nature."

"Survival of the fittest? But why isn't my baby the fittest?"

"It may be."

"My baby was supposed to be perfect!"

"Your baby is."

A mother had to be strong for her child, which was why Susan still didn't call Rick. She knew that if she heard his voice, she would lose it.

But she had to do something and returning to school wasn't it. Rather, she hit the highway for Portland and, determined to raise Lily's spirits, ushered her to their favorite Old Port restaurant. Lily claimed she wasn't hungry, but when Susan reminded her that the baby needed feeding more than ever, she downed corn chowder and a chicken sandwich. Afterward, they went shopping, and here Lily was cautious.

"We don't know what'll happen," she said, looking at the price tag of the jeans Susan held.

"We do," Susan replied with confidence and led her to a fitting room. Two hours, three stores, and a fortune later, Lily had a maternity wardrobe befitting the luckiest pregnant teen. Susan knew that clothes weren't the answer, but they helped. Lily's spirits were better-though she still didn't call Mary Kate or Jess. This development set her apart. Her phone remained off in her pocket. Exhausted, she slept through the drive home.

Having been awake with her much of the night before, Susan was exhausted, too. But she had to catch up on some calls during the drive. This was the second day in a row that she was missing school. The timing couldn't have been worse.

Susan did what she could from the car to reschedule appointments she had missed, and then, back home, she followed Lily's lead and ignored the phone. Together, they made room in the closet for Lily's new things, and when Lily picked up the sweater she'd been making for a daughter, they talked knitting.

When Lily asked what she should knit for a boy, Susan said boys needed sweaters, too, and when Lily turned up her nose at designs involving trains or trucks, Susan suggested cables. They spent a while looking at patterns online.

Were they in denial? Absolutely. But the alternative was worse.

After dinner, Susan sent Lily off to study. Life doesn't stop. You have exams in January. Yes, it does matter, even if you're going to Percy State. You can't let your grades slide.

Lily went upstairs, leaving Susan to think about college, which might have to be postponed if the baby was sick. PC KidsCare couldn't take a sick child, and, besides, Lily wouldn't want to leave the baby there if he had special needs. Mention of special needs sparked a new round of worries. Susan's health insurance was good, but was it good enough? Special education in Zaganack was good, but, again, was it good enough? And what did she know of Jane LaBreia, beyond an impressive wall of diplomas? And hospitals? The local one didn't have an NICU, which was a must for CDH babies. Most of them had surgery at birth-and Lily would have a cesarean herself, which meant a longer recovery.

By the time Susan drove back to school for the Christmas concert, she had worked herself into a panic. Had it not been for the likes of Evan Brewer, George Abbott, and Duncan Haith, she might have stayed home, but making a public appearance seemed crucial. She chatted, she smiled, she moved through the crowd, and made it through three-quarters of the program before slipping out. While she shivered in the cold waiting for her car to heat up, her panic returned.

That was when she called Rick, and while she thought she would be the one to lose it, he was. Why didn't you call me yesterday? I'm her father! Do not treat this casually, Susan. It's a serious problem. The barrage of questions that followed were more detailed than she could answer, and she grew more upset-the upshot of which was that Rick grew more calm. No sweat, honey, he finally said. I'll get the answers. This is my specialty.

She listened. She believed. She was actually feeling better by the time she got home, which was when she called Kate.