Sophie could finally focus on getting Danny home. Dr. Sheldon
had cleared their names overnight. Sophie and Adam thanked
him profusely.
“Hey, no need to thank me. I was only undoing the mess that
my half brother created. Now we just need to get Danny ready.
He’s almost there—a couple more pounds and a few more days in
an open crib.”
They were so close. She had done her best to help Madeline
Cross fill in the holes of her investigation. She had given her all
the names and information she had collected in her little note
book over the past three months. It wasn’t much, but it should be
enough to help. Plus, she had the video.
In preparation for going home, Sophie signed up for discharge
class. She needed to hear everything the nurses had to say about
how to take care of a preemie baby at home.
The class, it turned out, was straightforward: how to safely
bathe your baby, make sure they continue to gain weight, and
keep them healthy by staying away from sick people. Sophie
knew she could handle all that.
With five minutes left of the class, the nurse turned the meet
ing over to Josh.
“This is our pharmacy representative. He’s here to answer
any questions you have about the medications your babies will
be taking once you get home. All your babies are on at least one
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medication, and many are on more than one. Josh is the medica
tion expert.”
Josh spoke about the importance of vitamins and special pree
mie formulas that provided extra calories, vitamins, and minerals
that regular formulas didn’t. “Some of you may have babies going
home on medications for their lungs, or anti-reflux medications.
I’m happy to answer any questions you have about those.”
Sophie raised her hand and stood up. She wanted all the par
ents to hear what she had to say, even though she already knew
the answer. “Josh, I have a question. What can you tell us about
BrainHealth? I think we all need to know about this medication
that the doctors have recommended for us to give our babies. Has
it been tested on preemies?”
Josh smiled. “Yes, it has, and it’s not a new medication. We’ve
been giving it to premature babies for years but under a different
name. It’s caffeine citrate . . . you all know it as caffeine. We use it
to treat apnea of prematurity—a very common condition where
preterm babies episodically stop breathing. I believe most, if not
all, of the babies going home from this group have been treated
for apnea. As their brain matures and develops, they outgrow the
apnea and no longer need the medication. Almost all babies are
off caffeine by the time they go home.”
Many of the parents nodded.
He continued to explain what Sophie already knew, that it
was still being researched for use under the name BrainHealth.
“But now, with a new use for the medication, you all have the
choice of continuing your children on caffeine, in which case your
pediatricians will be prescribing the medication for ‘off-label’ use.
That means that it’s being used for a purpose other than what it
has already been approved for. Because it’s not yet approved by the
FDA specifically for this new purpose, you will all be asked to sign
a waiver saying you understand that it’s still an experimental drug.”
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He looked back at Sophie. “So the short answer to your ques
tion, Mrs. Young, is yes. It has been tested on preemies.”
“Josh, I’m not asking about apnea. I’m asking if there has
been any research proving that it helps with brain development.
Is it safe and effective to use ‘off-label,’ as you put it? My own
baby was in Dr. Sheldon’s study on BrainHealth and then was
taken out. Dr. Sheldon claimed it was because he had enough
numbers and didn’t need Danny’s participation any longer.”
The other mothers in the class were following the back-and
forth conversation. Nobody interrupted.
Josh replied, “The limited studies done so far showed that
there were no harmful effects on the study subjects and there was
a small improvement in their cognitive and motor development.”
“Were the findings statistically significant? Were they studies
done by objective researchers who weren’t paid to publish certain
results?”
Josh was no longer smiling. He looked like he was getting a
little warm under the collar. “I don’t know the details of the stud
ies. But, Mrs. Young, would you risk the chance that your baby
could be missing out on a potential miracle drug for his brain
development? I hope not.”
Josh made eye contact with every mother and father sitting
in the discharge class. “I doubt that any of these parents would
decline the opportunity to provide everything they possibly could
for their child’s health and well-being.”
“That’s the clincher, Josh. That’s what I have a problem with.
You are playing on our emotions as parents. You are betting that
we will take the risk, pay the cost, do anything, if it can help our
babies. I get it. I’m debating the same thing. But until the FDA
passes this drug to be used in this capacity, I think we all need to
be cautious about what we’re giving our children.”
The other parents nodded.
More people came into the room to listen to the lively
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conversation. One mother raised her hand and asked, “Do full
term infants get this too?”
Sophie sat down.
Josh answered, “No, it’s only available to premature babies,
because their brains were not fully developed when they were born.”
A father asked, “Does it help babies who have severe brain
damage?”
“We don’t know yet, but any premature infant, with or with
out brain damage, will be advised to take BrainHealth once
they’re discharged. Trust me,” said Josh as he looked around the
room, hands outstretched and open. “The choice is yours. You
don’t have to give it to your kids. But if you do, you will be doing
them a big favor. This is a miracle drug for premature babies who
are still developing.”
Sophie rolled her eyes. The parents in the audience were
beginning to whisper among themselves. She didn’t trust Josh
and wasn’t convinced that the off-label use of this drug was
harmless. But she didn’t know for sure.
Sophie stood up again. “Josh,” she said, “just one more ques
tion, and I’d like you to give a straight answer. Can you tell us that
quality scientific studies have been done to prove its safety in pre
mature babies and its effectiveness in their brain development?”
Josh hesitated.
Sophie couldn’t help herself. “I’ve looked it up, Josh. Not
only that, but I’ve also talked with Dr. Sheldon about this issue.
So far, there are no definitive research results. No proof. Period.
You’re marketing it as a potential silver bullet when it hasn’t
been proven to help babies’ brains at all.”
There was a tense silence as the audience waited for Josh’s
response.
“Mrs. Young, I’m sure those results will be available very soon.”
Agitated, Sophie forced herself to sit back down, relieved to
hear another mother ask a question.
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“Does insurance cover this drug?”
“Well,” answered Josh, “because it’s so new to the market,
insurance does not cover it currently, though I’m sure that will
change soon.”
“How much does it cost?”
“Kindred Pharmaceuticals and Metro Hospital are working
together to send you home with a free month’s supply. After that
you’ll be able to buy it for around fifty dollars.”
“Fifty dollars a month?” someone asked.
Josh cleared his throat. “Actually, that’s for a week’s supply.”
Gasps could be heard around the room.
“What? Are you kidding? That’s two hundred dollars a
month, times three years . . .” The person speaking calculated on
his phone. “That’s over seven thousand dollars out of our pock
ets. That’s crazy!”
Others jumped in. “That’s highway robbery!”
“You’re crazy if you think we can pay that!”
“I can’t afford that on my salary!”
Josh raised his voice to be heard over the commotion. “Yes,
I know that’s a lot of money. I know, I understand.” The crowd
settled as Josh took command of the room. “But what is it worth
to you to provide the best possible future for your children? By
being born too early, your babies have been traumatized. Life in
the NICU is nothing like what life would have been like if they’d
stayed in the womb. Now, here is a drug that could make up for
all the damage of being born early. It’ll help prevent behavior
problems and learning disabilities and enhance their cognitive
abilities.”
Josh paused, then added, “And I’m sure that well before three
years from now, the FDA will approve BrainHealth, and then it
will be covered by your insurance.”
Sophie watched the other parents. They went from being
angry to appeased.
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They were buying it hook, line, and sinker.
Sophie’s phone buzzed with an incoming text. She ignored it
as she stood to speak again, pressing Josh. “Just to clarify, you’re
saying we should just open our pocketbooks and feed our kids
this little pill for the next three years, on the hope that it might
help them? It feels like we’re being held hostage by Big Pharma.”
Sophie paused for effect. “Tell me, Josh, would you give it to your
own child?”
All eyes turned to Josh.
“I believe all premature babies should be given BrainHealth.”
Sophie repeated, “But would you give it to your own child?”
Josh replied, “I don’t have any children.”
Sophie’s eyes bore into him. “No children? How interesting.”
Turning to the nurse leading the class, she asked, “Is class over?”
and walked out
