Unhappy West Coast women who longed for children quickly learned that IVF was at last being done at their doorstep. They flew in droves to ‘The Henry Dwyer Institute.’
And yet even amid the lushness of Hawaii some vestiges of Hank’s ascetic priestly days remained: he had a regimen and certain principles by which he lived unswervingly.
For instance, he would not eat red meat, knowing, doctor that he was, that it had lately been proved dangerous for the colon, and he did not want to do anything that would impair his longevity.
He only worked three days a week.
He only drank after five o’clock.
He never – without exception – dated any girl older than twenty-five.
When Barney Livingston’s questionnaire had reached Hank’s Hawaii office, he had been in England, studying the making of babies. And his secretary, thinking it was junk mail, did not sent it on.
In one sense Hank was glad, for he thought Barney’s queries were irrelevant to his own medical life.
How could he answer such a stupid document? ‘The tensions of the job’? ‘The strain of the commitment’? ‘Regrets’? These words meant nothing to him. So instead of filling out the form he simply wrote:
Dear Barney,
I am glad to hear from you. I guess we should have kept in touch while I was in Vietnam. But you know how things were out there and it was pretty hairy at the end.
First the sad news – for reasons of her own, Cheryl did not seem to appreciate my commitment and during my second tour of duty in Nam connived a way to get our marriage ended and still be declared a spinster so she could wed some other guy (and make him miserable).
I console myself that the girl of my dreams is still out there somewhere. Perhaps she will ride in on a surf board one of these days in a golden bikini. Don’t think I haven’t been looking.
The only classmate I have seen in person is Lance Mortimer, who came here on his first and second honeymoons. For some reason he decided to try Mexico for marriage number three.
Anyway, he’s doing very well. As I don’t have to tell you, anesthesia is a cushy number and Lance works something like four days a month. The rest of the time he devotes to projects he’s developing for television. I hope you hear from him. I count him as one of the big successes of our class.
On another matter: Just the other day I came across Mind of a Champion remaindered in my local bookstore for just two bucks. Let me tell you that’s a real terrific book. You should be very proud. I wasn’t here when it came out, so I don’t know what kind of press it got, but it deserves to be a smash.
You can be sure that when your book on doctors hits the stands I won’t wait until it is sold at discount, I’ll put in an order in advance. I hope you’re good to me in it.
Look me up if fate should ever bring you to Hawaii. I own one or two small hotels and everything would naturally be on the house.
Best Regards,
Hank
P.S. I am enclosing a photocopy of the full page spread done by the Honolulu Advertiser when our thousandth baby was born. The picture kind of says it all: me in the center holding quads, surrounded by rows and rows of happy mothers hugging the offspring they always dreamed of.
In a very real sense I feel like the father of them all.
56
‘The infant with asphyxia at birth is at risk for a long-term … damage ranging from mental retardation, cerebral palsy, and seizure disorders to minimal brain damage, perceptual handicaps, and learning disorders …’
‘Disturbances of the Newborn’
The Merck Manual of Diagnosis and Therapy (14th ed.), p. 1759.
No child in history was more studied than little Harry Livingston.
He was also scrutinized, examined, analyzed, tested, and retested.
Since they both felt they would never know the truth about how long Harry was denied oxygen, Barney and Laura had to assume the worst. And their joy in him was tempered by a constant apprehension that the signs of brain impairment might reveal themselves. Today. Tomorrow. Next week.
On alternating months, Laura would take Harry to be examined by the chairman of Pediatrics at Columbia, or Barney would take him to the chief at Bellevue. (They never revealed their medical bigamy to either specialist.)
The doctors did not make light of their obsession. For the Livingstons had genuine cause for concern.
‘We certainly won’t be out of the woods until he’s at least two.’
This was the opinion of Professor Adam Parry of P & S, the most respected pediatrician in New York.
Laura quickly countered, ‘But that’s of course if there’s little damage. If not—’
‘Yes,’ Parry conceded, ‘If it’s something like cerebral palsy, we’ll know soon enough.’
‘Jesus, Castellano, I wish you wouldn’t be so nervous,’ Barney commented as they were coming back from their nth consultation. ‘The kid looks fine to me. I mean, I’ve kept up with my neurology. Why are we worrying so damn much?’
‘You can deny it all you want, Barn. But you know about brain development – a third of the intercellular connections are formed after birth. The neural ridges are still developing in Harry’s sweet little head, and some of the pathways might have been blocked while that Iranian asshole was romancing the nurses. Now, be honest – doesn’t that make you nervous, too?’
‘No,’ he replied matter-of-factly.
‘Are you telling the truth?’
‘No,’ he answered candidly. ‘But I figured I could be more supportive if I lied.’
She looked at him with grateful affection.
‘You’re holding your breath, aren’t you, Barn?’
‘Yeah,’ he replied tersely. And after brooding for a moment he added, ‘It’s murder, isn’t it? That sonovabitch Muhradi handed us a bundle of joy – and a time bomb. If only he had told us the truth. I mean, however bad the truth was – but the truth – we could at least sleep at night. If I knew Harry would have to go to a special school or something, I wouldn’t love him any less …’
He did not need a word from Laura to know she agreed.
‘So why the hell couldn’t he be honest with us?’
‘Maybe he was worried about a malpractice suit.’
‘He damn well should be – he was negligent as hell. If Harry turns out not to be okay, I’ll go back and strangle the guy.’
They rode on in silence. Laura stared blankly out of the taxi window and at last muttered, ‘He’s one of those holier-than-thou types.’
‘What?’
‘You know, the kind of doctor who thinks he’s not answerable to anybody but God – and maybe not even then. He’s not the first of that ilk that I’ve come across.’
‘Me, either.’
‘Are you going to write about them in your book?’
He nodded. ‘I’ve already outlined a chapter called “Doctors Who Lie.” The only problem is I can’t write it yet.’
‘How come?’
‘Because I’m still too goddamn angry.’
And so they continued watching, ever on the alert for the minutest irregularity, the tiniest sign of impairment. In short, the slightest hint that Harry was not perfect.
If nothing else, their offspring was perceptive. Through some as-yet-undiscovered baby sensory system, he seemed to know what his parents were thinking and tried to allay their fears at the earliest opportunity.
At six weeks old he smiled. They could both remember the precise circumstances. Estelle, on one of her frequent trips from Miami to dote on her grandchild, had brought Harry a multicolored ‘gym’ to go across the top railings of his crib.
Laura shook the plastic blocks to illustrate that each was not only a different color but made a different sound.
The tinkle of the red one made him smile.
Thank God, they thought to themselves, one hurdle cleared.
The next big milestone would be when – or if – he would sit up. And Harry dutifully obliged by sitting up
in his cot well before his seven-month deadline.
And then – wonder of wonders – just a week after his first birthday, he took five wobbly steps from Barney’s easy chair to Laura’s arms. The boy was indeed a champion!
All Barney could do was repeat again and again, ‘Thank God, Laura. Thank God, the kid’s okay.’ And think to himself, So far.
And then one evening when they both were bathing him, Barney was struck by yet another fear. ‘I only hope we haven’t freaked him out by letting him sense all our anxiety.’
‘I don’t know, Barn,’ Laura said, lifting their cherubic treasure out of the water and placing him in the towel held out by his father. ‘We’ve got at least another year to wait. I mean, there’s still time for all kinds of subtle cerebral abnormalities to manifest themselves.’
‘Thanks, Castellano, thanks a lot,’ he muttered.
‘What for?’
Barney looked up from the table on which he was powdering Harry and replied, ‘You just gave me an incredible gift – another three hundred and sixty-five nights of worry.’
Barney’s first patient was at 7 A.M. But he got up at five-thirty to be sure of having a few quiet moments with his son. To indulge in the joy of changing his diapers, giving him his bottle, burping him – and all the mundane things he never dreamed would bring such ineffable pleasure.
While Harry sucked his breakfast, Barney would lecture him on current events, literature, philosophy, and sports. Not because he thought this would make his son grow up to be more intellectual, but just to talk to him and hear him gurgle in response.
And he hated like hell when the unsympathetic kitchen clock told him he’d have to put Harry down again.
Laura and Barney had a serious argument. She insisted that Harry’s first spoken syllables (at eight and a half months) were ‘Da-da,’ and he stubbornly insisted they were ‘Dak-ta’ – which indicated his already-chosen profession.
Being a fully psychoanalyzed psychoanalyst, Barney knew enough not to put pressure on his growing son. Which is why he bought a fireman’s helmet as well as a doctor kit for Harry’s second birthday.
That summer they moved to Connecticut. Although it meant long train rides for both of them (Laura had cut hospital commitments to one day a week), it would give their cherished offspring the fresh air, the greenery, the trees that had been less abundant during their own childhoods.
Overcompensating for his scarcity during the week, Barney lavished attention on Harry during weekends. Yet the boy was already showing such precocious signs of good social interaction that he sometimes preferred the company of the two toddlers from next door – who had a sandbox. Indeed, from the way their son behaved, both Laura and Barney agreed that Harry was longing for a sibling and decided to comply.
It was, of course a pleasure to attempt to start production. But when things did not go right for seven months, Laura went to see her gynecologist, who told her that she needed surgery that would make further children inconceivable.
Thus all they had, and ever would have, was their little Harry.
The night that Laura found out, she and Barney swore an oath to each other they would not make Harry a neurotic kid – overprotected, overwatched, and overburdened with the weight of their expectations.
Laura had found herself initiated into the world’s largest secret society – motherhood.
The days went by without her knowing how she had spent them. And yet her memories were visible and tangible: the playdough coloring on her hands, a flower Harry presented to her, slightly scrunched from being carried in his little fist.
Once when they were walking (Harry toddling) by a pond, they stopped to feed the ducks.
‘Mommy, why ducks not wear shoes?’
Laura, unprepared for esoterica like this, could only say, ‘Actually, I’ve never noticed that. Perhaps your daddy knows. We’ll ask him when he comes home.’
And at dinner, when Barney asked, ‘What did you guys do today?’ she usually said ‘Nothing special.’ But what she really thought was, Everything was special, everything was magic, really.
In fact, something selfish in her kept repeating, Don’t grow up, Harry – stay like this forever.
Laura felt a painful wrench the first day that she left her child at his playschool (for three hours). In fact, she sobbed long after Harry was happily playing Simon Says with his new friends. (‘He’s so young, Barn,’ she had said plaintively the night before, ‘he’s just a baby.’)
She had never before realized how totally involved she was in loving him and therefore – even for so short a time – missing him.
Though they had pledged not to hover and examine, they could not help but notice that as his third birthday neared, Harry was ever-so-slightly lethargic. And although his girth was increasing, he was not gaining weight.
One night when Laura was washing him, she called Barney into the bathroom.
‘Feel this,’ she said solemnly, touching Harry’s belly.
He placed his hand where hers had been (‘Ow, Daddy, that hurts!’) and knew exactly what was on her mind – enlargement of the liver and spleen – a condition that bears the daunting name of hepatosplenomegaly.
It was the nightmare they had lived through in their minds.
But this was not what they had feared. This had nothing whatsoever to do with brain development. This was something altogether different.
At six the next morning, after a night of tortured self-recrimination (‘We should never have let him play out in the rain that day.’ ‘It’s my fault, I put too many blankets on his bed.’), Barney called Adam Parry.
‘Bring him in for tests so we can see what’s going on,’ the pediatrician ordered.
In twenty-four hours Harry Livingston’s milieu changed from the sandbox to the hospital ward. There were definitely signs of pathologic process.
But what? The staff performed innumerable blood tests (‘No more needles, please,’ Harry yowled) – and repeated those that did not satisfy Laura.
‘These are all to make you well, darling,’ she said to try and mollify him.
‘I don’t like this place. I want to go home.’
At which Barney, now a silent witness, found the strength to say, ‘We all want to go home.’
The doctors found that because of his enlarged spleen, Harry had anemia and thrombocytopenia – a low supply of platelets in the blood. He was at risk for rupture of the spleen.
And now an endless stream of specialists marched to and from Harry’s bedside. They were tall; they were short; they were fat; they were thin. Yet all had one thing in common: they left the ward shrugging their shoulders.
Laura and Dr Parry wracked their brains for possible diagnoses. Were not the signs best explained by Gaucher’s disease?
To which Parry replied, ‘They are, but you could also make a case of metachromatic leukodystrophy – and it’s neither. Listen, Laura, you’re a colleague, so I can be frank with you. I don’t know what the hell he has. And I don’t know how the hell to treat it. All I know is that it’s progressing …’
Barney tried his best to keep up with his sickest patients, but spent every spare minute either with Harry or in the Med School library, researching childhood diseases.
Warren called each day and asked if there was something, anything, he or Bunny could do.
‘Yeah,’ Barney answered. ‘And don’t take this the wrong way, War – but please just leave us alone.’ And then he added, ‘And please don’t tell Mom.’
They both slept in the hospital, which is to say the hospital was where they didn’t sleep. For how could they? Every hour seemed to mark further deterioration in their child’s condition.
If they slept, Laura said grimly, they might miss a whole hour of Harry’s life.
They sat up, sheaves of paper between them, and tried to find some common link in the various reports of all the different specialists who had examined Harry.
‘There’s got to be a clue,’ Barney insiste
d, ‘some common denominator.’
Laura looked at him with desperate sadness in her eyes and said, ‘Face it, Barney. Even if we do find out, it’ll probably be too late.’
‘No, Castellano, no,’ he responded with quiet anger. ‘You try to get some sleep. I’m going to use the hospital computer and see what I can get from our linkup with the National Library of Medicine. At this hour of the morning there’s probably no one else waiting to use it.’
He left and she lay down into a semiconsciousness that neither dulled her pain nor gave her rest.
Her next recollection was of an unshaven Barney standing over her bed, a computer printout in his hand.
‘I know what it is,’ he said somberly.
‘Are you sure?’
He nodded. ‘Three cheers for computer science. Now I know exactly what our son is gonna die of.’
She sat up, reached for her glasses, and took the paper from him.
‘I’ll save you the trouble of reading it, Laura. It’s called RSS – the “Reeve-Strasburger Syndrome.”’
‘I’ve never heard of it.’
‘It was first discovered in the late eighteen-nineties by some guys in London. It’s a lipid storage disease that affects the myelin coating on all the nerves. I found an article in a Norwegian journal that explains its cause. Abnormal myelin is produced because of the lack of a single enzyme – aryl sulfatase B.’
‘You mean like multiple sclerosis?’ she asked.
‘No, that’s related but a little different. MS results in de-myelination. But the abnormal myelin in RSS not only coats nerves, it also accumulates in places like the liver and spleen.’
‘Jesus, Barn, what you’re saying makes sense. I’ll call Parry at home.’
‘It can wait, Laura,’ Barney replied in a state beyond exhaustion, ‘there’s no need to hurry for this one.’
‘Why? How is it treated? Did the machine give you any answers?’
He nodded. ‘Here, take your pick. Bone marrow transplant, liver transplant, antileukemic chemotherapy. A magnificent range of possibilities.’
He paused, and as he felt his throat tightening, said, ‘None of them works. In fact, there’s no record of anyone surviving past the age of four.’