by Marta Perry
“That must have been awful for Sophie. Seeing this baby getting jaundice may be what triggered her psychosis.”
“I imagine you’re right.”
“I’ll let Phillip know what you’ve told me. I’ll pray this isn’t the same thing.”
“I’ll do the same. All those tears over Sophie’s illness, that’s not like you, Amber. What’s going on?”
“We need you back,” she moaned, then pressed her fingers to her lips. She had no intention of telling him that his grandson was breaking her heart.
“I’m getting better by leaps and bounds.”
“Are you? Honestly?”
“Okay, now you’ve got me worried.”
“Don’t be. Things are…okay here. I’m tired. I miss you.”
“Are you sure there isn’t something else you want to tell me? Are you and Phillip still not getting along? Wilma told me he accused you of doing deliveries without his consent. I’m gonna have to have a talk with that boy.”
“No,” she said promptly. “Just…just get well soon. Everyone misses you.”
“Okay.” He didn’t sound convinced but he hung up.
Amber settled the handset back in the cradle and lowered her head on her folded arms. She did miss Harold. Things were okay at the clinic. It was only her heart that was broken.
She’d seen the look in Phillip’s eyes. The look that said she had messed up big-time. Exactly the way he had expected.
Sitting up, she dried her face on her sleeve. After leaving her office, she locked up the building and got in her car. She didn’t drive home.
Chapter Twenty-One
When Phillip pulled into his grandfather’s driveway it was well after eleven o’clock at night. He’d had a long day and an even longer evening.
Getting out of the car, he headed for the front steps. Someone rose from the wrought iron bench that circled the maple in the front yard and came toward him. He saw it was Amber when she stepped into the light coming from the front porch.
She had her hands clenched tightly in front of her. “How are they?”
“Both of them are doing better.”
He heard her sigh of relief. “I’m so glad.”
They stood staring at each other like strangers in the near darkness. How had their relationship gotten so out of whack?
“Amber, you should go home.”
“I needed to know how they are.”
He walked toward the bench and sat down. She joined him but left some distance between them.
Running his hand through his hair, he said, “Sophie has been admitted to the psychiatric unit. Little Grace had a bilirubin level of twenty-six milligrams per deciliter. We did an exchange transfusion and got it down to sixteen.”
“That’s still a long way above a normal of four.”
“She’ll stay under triple lights for now. We’re doing a workup to see if this is an infection. It doesn’t look like it.”
“Will she have brain damage from such a high level?”
“You mean will she want to be a doctor when she grows up?” He didn’t get the smile he was hoping for.
“Phillip, please. Tell me.”
“She’s lethargic but she isn’t showing the more serious symptoms of kernicterus. They’ll check her bili level again at midnight. I came home to get a change of clothes. I’ll be spending the night at the hospital.”
She nodded slightly. “I talked to Harold about Sophie’s other children who died. He thinks it was some kind of liver disorder.”
“All Grace’s liver studies are normal. You know that in some cases the reason for a high bilirubin is never found and the child recovers. Grace was a little dehydrated. I think she’ll be fine in a few days. Stop worrying.”
“I can’t help feeling guilty.”
He hated to add to her burden, but he didn’t believe in sugarcoating the truth. “To have a bili level this high this soon after birth, she had to have had some symptoms when you saw her.”
Clasping her arms across her middle, Amber stood. “I’m so sorry. I thought it was ordinary newborn jaundice. I should have gone back to see her again.”
“Amber, mistakes happen.” He rose and reached for her. She stepped away. She wouldn’t look at him.
“You’ll stop all my home births, won’t you?” She sniffed and wiped her face with the heels of her hands.
“I have to. You know that.” He hated giving her this news on top of everything else.
She gave a short, quick nod. “I knew you would.”
Picking up a mailing envelope, she held it out to him. “These are the old charts you wanted.”
He took them, wondering what he could say to make this whole thing better. No words came to him.
She said, “Thanks for giving me an update on Sophie and Grace. I’ll see you on Monday.”
Before he could stop her, she vanished into the darkness.
* * *
Phillip kept close tabs on Grace overnight. Her bilirubin levels dropped as expected. With no sign of infection or other underlying problems, he thought he’d be able to send her home in a few days.
By early in the morning, he was able to gradually drop the number of blue lights to one. Her level stayed low and steady. He went home.
He wanted to call Amber then, but he wasn’t sure what to say. In spite of being exhausted, he slept poorly. The phone rang shortly after six-thirty the next morning. The news was good. Grace’s levels were much lower.
He’d had the nursing staff take the lights off for six hours and recheck her. She might have some rebound but he didn’t expect much.
Waiting was the hardest, so he called to get an update on Sophie. The report he got for her was good. Sophie continued to improve with medication, but she remained under the care of her psychiatrist. It might be several more days before she could be reunited with her baby.
Getting dressed, Phillip got ready to go into work, eager to see Amber and find out how she was doing. The answer, as it turned out, was not well.
She came in to work but remained aloof and withdrawn. He missed her smile more than he missed the sea. When he tried to talk with her, she found something to do elsewhere.
A little after one o’clock, Wilma came toward him with a sheet of paper in her hand. “The hospital called over these lab reports for you.”
“Thank you.”
Just then Amber came out of the exam room. She muttered, “Excuse me.” Then she slipped between them and went into her office and shut the door without another word.
He stared after her. “Wilma, what are we going to do with her? I hate to see her like this.”
Patting his arm, Wilma said, “She’ll come around. She feels responsible. She’s going to have to learn to live with that. Medicine is not for the faint of heart.”
“Amen to that.”
“How are you doing?”
“Me? I’m fine.”
“Are you?” Wilma nodded toward Amber’s door. “I ask because you’ve got the same hangdog look on your face that she’s wearing.”
As Wilma walked away, he glanced at the lab report in his hands. Grace’s bilirubin level had shot back up. Her jaundice had returned.
This was not right. Puzzled, he went to his phone and called the pediatric unit with orders to restart the lights and retest her in six hours.
Sitting at his desk, he noticed the old chart files he’d been too busy to review. He opened them and began to study them.
The first chart he picked was the child named Knepp. As it turned out, it wasn’t one of Sophie’s children. The parents were Otto and Norma Knepp. Their child had died at eighteen months from persistent jaundice. As he read the lab reports and notes by his grandfather, he became more and more intrigued. It was as if he were reading Grace’s chart. The similarities were too close to ignore.
There was a soft knock at his door. Amber looked in, staring at a point over his head. Each time she couldn’t bring herself to look him in the face, another piece go
t shaved off his heart. He had no idea how to mend it.
She said, “I’m getting ready to leave. Do you need anything before I go?”
A kiss, a hug, a smile. I want you back, Amber. How do I do that? Help me, God. Help me find a way through this wall she’s put up between us.
He glanced at the chart in his hands. Medicine was her life. Somehow, the answer was in their work.
“Amber, do you remember a child of Otto and Norma Knepp who died about eight years ago?”
He saw the hesitation in her face, but her curiosity won out. “I do. The funeral was held the day after I arrived here. Why?”
“I started reading this old chart and found that this Knepp child died of severe jaundice at eighteen months of age.”
Amber stepped inside the room. He wanted to shout for joy. Instead, he kept his gaze down. She asked, “Was it liver failure?”
Leafing though the chart, he said, “Not according to these lab reports. Do you know if Otto and Elijah are related?”
“I believe they’re first cousins. Actually, I think Norma and Sophie are second cousins.” She came to peer over his shoulder at the papers he held.
His heart raced at her nearness. It was a struggle to keep his voice level. “Sophie’s twins, this child and now Grace, all related. This suggests we are dealing with some kind of inherited disorder.”
“Like what?”
“I’m not sure. Maybe something like Dubin-Johnson or Rotor’s syndromes, maybe—” He spun around to the computer and began typing.
Pulling a chair up, she sat beside him. “Maybe what?”
His frustration at the slow speed of the dial-up connection was offset by Amber’s nearness. He wouldn’t care if it took an hour to get online as long as she stayed beside him.
Nudging him with her elbow, she repeated, “Maybe what?”
“Maybe it’s Crigler-Najjar Syndrome.”
Her eyebrows shot up. “Why does that sound familiar?”
“It’s a very rare recessive genetic defect. The actual incidence is less than one case per one million live births.”
“One in a million?” she repeated. “And you think we’ve had four suspected cases in our town? That’s kind of a stretch.”
“No, it’s not. There are only about two hundred cases of Crigler-Najjar Syndrome in the world. There are nearly forty cases in the United States. Care to guess where the majority of those are found?”
He saw the lightbulb come on. She leaned toward him eagerly. “A recessive gene disorder would occur more frequently in a population with limited common ancestors.”
“Bingo. Old Order Amish and Mennonite communities.” The computer finally connected. She bumped him with her elbow to gain access to his keyboard.
Happily, he allowed it, grinning like a schoolkid. This was the woman he’d come to love, determined, smart and eager to help. She typed quickly and pulled up the Web site for the Pennsylvania Clinic for Special-Needs Children.
Tapping the screen with her finger, she said, “This is where they’re doing wonders with genetic research among the Amish. They are working on treatments and, someday, maybe even cures.”
“How do you know this?” He stared at her in amazement.
“I read everything I can about my mother’s people. This is the contact information for the clinic.” She pointed to a number scrolling at the bottom of the screen.
Leaning close to look, he inhaled the clean, citrus scent of her hair and the fragrance that was uniquely her own. It sent his head swimming. He reached for the mouse at the same time she did. His hand covered hers.
Her gaze flew to his face, those beautiful mermaid eyes widened with wonder. He’d never wanted to kiss anyone so badly in his whole life.
* * *
Never had Amber wanted a man to kiss her as much as she wanted to be kissed by Phillip. He knew it. She saw it in his gaze.
He was so close. If she moved a fraction of an inch toward him it would be the impetus he needed. The temptation was so great it formed a physical ache in her chest.
“Amber.” He breathed her name into the air with such longing.
Turning her face away, she concentrated on keeping her wild emotions in check.
He squeezed her hand. “Tell me you feel the way I do about you. Tell me I’m not imagining this…thing we have.”
“Phillip, there’s no future for us.”
Taking her chin in his hand, he tipped her face toward him. “Are you sure about that?”
“Maybe,” she whispered, wishing for some way to keep this wonderful man in her life.
His tender smile was her undoing. Closing her eyes, she raised her lips to his. His kiss, featherlight at first, slowly deepened as his hands cupped her face. This was how it was meant to be between two people in love.
Pulling away at last, he drew a ragged breath. “You rock my world, Amber. We can work this out, darling. I know we can.”
“How? Do you give up your dreams or do I give up mine? How long before one of us starts to feel cheated? To wonder if it was worth it? I won’t do that to you. I won’t do it to myself.”
How she wanted to snatch her words out of the air and take them back. She couldn’t because they were the truth.
“I understand.” His voice grew rough as he withdrew his hand in a soft caress. “I don’t like it, but I understand.”
Clenching her jaw, she refused to acknowledge the stinging behind her eyes. She forced her attention back to the computer screen. “This may not be what Grace has.”
When he didn’t say anything, she chanced a glance in his direction. He stared at her with a lost, sad look in his eyes.
After a moment, he blinked hard, then focused on the computer and took control of the mouse. “I’ll have to do some further research on this disorder, but I think we’re on to something.”
He clicked through to information and symptoms of the disorder. “It says high levels of unconjugated bilirubin in the presence of normal liver function is characteristic of CNS. That’s exactly what I’ve found with Grace. The cause of CNS is a missing liver enzyme. That explains a lot.”
Amber forced herself to concentrate on the computer screen and not on her breaking heart. A child needed their help. “Grace’s liver functions normally, but without that specific enzyme, the production of bilirubin in the blood can’t be controlled by her body.”
“Right. Nothing we’ve tested for so far could detect that.”
One more click brought up the picture of a child resting in a crib under intense blue lights. A mirror on one side of the crib reflected the light around the sleeping infant.
Phillip said, “The current treatment is twelve hours of phototherapy a day for their entire lives. With the type 1, which sounds like Grace’s illness, patients will die before they are two years old without these special blue lights.”
Amber couldn’t imagine trying to sleep one night under such intense lamps, let alone a whole lifetime.
He leaned closer to the screen. “These people are doing some fascinating work. In rural Pennsylvania, of all places. How strange is that? They’ve identified more than thirty-five different diseases that Amish children can be born with. Wow. What I wouldn’t give to tour their facility.”
“Is there anything else that can be done for Grace?”
“Sorry, I got off on a tangent for a second. It says a liver transplant provides the only known cure.”
Sitting back, he shook his head. “A transplant exchanges one set of problems for another. Costly antirejection drugs, infections, a whole host of other potential complications.”
“But it can save her life?”
He looked at her. “Yes. Would the Amish consent to a liver transplant for one of their children?”
“Harold told me they won’t accept heart transplants. I do know someone who had a kidney transplant. Yes, I believe most of them would allow it. They’re not opposed to modern medicine.”
Rubbing his chin with one hand, he studie
d the screen. “She would need home phototherapy lights like the ones in the picture in order to survive until she’s old enough for a transplant.”
Amber sat back with a sigh. “I see one big hurdle with that.”
“What?”
“The Amish have no electricity in their homes.”
“That is a big problem. Would they make an exception for this?”
“I’m not sure. What is the likelihood of matching Grace for a liver?”
“We’re getting ahead of ourselves. First we need to confirm that this is what she has.” He picked up the phone and began dialing.
“Who are you calling?”
“The physicians at the Pennsylvania Clinic for Special Needs Children. I want to pick their brains.”
Rising to her feet, she stared down at him with pride and sadness. She deeply admired his intensity, his knowledge and his desire to help patients. He was a fine doctor. She would be sorry to see him leave—for that reason and many others.
As she headed for the door, he softly called her name. When she looked back, he said, “Thank you.”
She gave him a half smile and a short nod. He was a good man but he wasn’t the man for her.
The eagerness in his voice as he spoke with the genetic specialist and the questions he fired off proved to her he’d never be happy practicing small-town medicine. His vocation lay in another direction.
Her calling was here among the Amish. Only, how could she be happy in Hope Springs without Phillip?
Chapter Twenty-Two
At the sound of her phone ringing, Amber laid aside her duster to answer it. Even a telemarketer would be a welcome break from her Saturday morning housecleaning. How did things get so dirty in a week?
Snatching up the portable handset, she pressed it to her ear. “Hello?”
“Amber, I’m glad I caught you.” The cheerful voice belonged to Jennifer Hart, the director of the county animal shelter.