Frank offered a hopeful nod, started the car and pulled out of the lot. “Home?” he asked.
Joan thought about it and glanced toward the back seat. Brian’s heavy eyelids were fighting sleep. The car ride will definitely finish him off, she pondered. He’ll be sleeping in a matter of minutes. “Stop by the market, so I can get more formula. Two cans aren’t going to go far.”
Frank nodded again and pointed the car’s nose toward the closest A&P.
At the checkout counter, without even realizing it, Joan began shuffling her feet. There were three people in front of her. She looked out the store’s giant front window – between the many advertisements – but couldn’t tell by her husband’s body language whether Brian had awoken yet. Suddenly, she felt a tap on her shoulder and jumped.
“Hi Joan,” Katy, an old high school friend, said. “I’m sorry. I didn’t mean to frighten you.”
“Oh…hi, Katy,” Joan replied, leaning in for a quick, awkward hug. “That’s okay.”
Katy smiled. “I heard that you just had another baby. Congratulations! Boy or girl?”
Joan placed six cans of the soy formula onto the conveyer belt and reached into her purse for her wallet. “Boy,” she said. “We named him Brian.”
“Wonderful. And everyone’s good?”
Joan paid the cashier. “Couldn’t be better. Thanks.” She looked out the window toward the station wagon and, thinking that Brian might now be awake and screaming from starvation, she actually felt guilt take another bite. She looked back at Katy. “And how have you been?” she forced herself to ask her long-forgotten friend.
“The same…” Katy sighed. “I’d love to finally meet a good guy. There aren’t any out there, you know.”
Joan’s nervous eyes alternated between the slow, elderly bagger and the station wagon. The old man bagging the groceries smiled at her. Although she felt like crawling out of her skin, she returned the smile. I need to get out of here and back to Brian. She looked back at Katy again. “Good men…they’re out there,” Joan said and snatched the heavy paper bag filled with cans of formula. “Don’t give up looking.”
“I wish that were true, but…”
“Katy, I don’t mean to be rude, but I need to leave and feed my baby. He’s hungry.” Without waiting for a reply, Joan turned on her heels and marched out of the store.
Katy’s mouth hung open – until she spotted the cashier smiling at her; a woman who looked like she might be a really good listener.
Less than an hour after Brian consumed his first bottle of Neo Mulsoy, Joan changed his diaper to discover that he had diarrhea. It was like dark muddy water that had just run out of him. “Oh, God,” she said, but decided not to complain to Frank just yet. Nervous, she grabbed a pen and paper, and jotted down the date and time. If we have to go see the doctor again, she thought, this time I’ll have the information to back up my claims.
As she filled another bottle with tap water, more guilt gnawed at the core of her maternal being.
After nearly two weeks of being on the soy-based infant formula, Brian still experienced frequent vomiting – only now, he also suffered from severe diarrhea. He wouldn’t stop crying and rarely slept. Joan spent her waking hours trying everything to console him and stop him from waking up Frank and Ross. Most of the time, it was no use. “Do something, Joan!” Frank screamed from their bedroom. “I have to work in the morning!”
But there was nothing she could do. She just sat in the dark with her son and wept along with him. Her breast milk had dried up and the guilt she carried for it was overwhelming.
At wit’s end, she finally called Doctor Carvalho’s office and nervously explained, “My baby won’t stop crying and he hardly sleeps. When he’s not vomiting the soy formula, he’s passing it as diarrhea. I’m sick with worry and I need to bring him in to see the doctor right away.”
An hour later, the nurse who had taken down the information called back and told her, “The doctor would like you to stick with the Neo Mulsoy.”
Joan slammed the phone into its cradle and gasped for air. Her heart began to beat hard in her chest. She didn’t know what was wrong. For a few terrifying moments, she couldn’t breathe. She couldn’t think. With a sweaty face and shaking hands, the vicious wave crashed over her and left just as quickly as it had arrived. Although she felt dazed and confused, she still realized that it was fear; panic for her helpless baby boy.
Chapter 3
Summer 1977
Joan checked the wall calendar and cringed. Since Brian’s first bottle of soy-based formula, he was now suffering from weight loss, lethargy and severe chest congestion. She picked up his medical diary and flipped through its pages. It was filling fast – dates, times, detail after brutal detail.
To her surprise, on one of the pages of Brian’s medical diary, Ross had drawn two stick figures. It was a picture of him and his baby brother. Her eyes filled with tears of love and sorrow. Poor Ross, she thought. The little boy was now forced to sleep on the couch in order to get any rest at all. Most nights, he’d stay by his brother’s side for as long as he could – until Joan forced him out to the living room where the couch had been converted into a temporary bed. “Please, Ross,” she told him. “Little boys shouldn’t have bags under their eyes. Mommy will take care of Brian. I promise.”
Fortunately, Frank was also aware of the situation. Fearing that Ross was getting lost in the chaos, he suggested, “How ‘bout I take him out on Friday for a boy’s night out? We’ll get some pizza and then go catch a movie.”
“I think that’s a brilliant idea.” Joan said, and kissed her husband tenderly. “Which movie?”
“Well, it’s between Star Wars or Disney’s new film, The Rescuers.”
“Isn’t Ross a little young for Star Wars?”
“Yeah, but I’m not,” he joked.
Joan slapped his arm, playfully.
“Okay, then an adventure about two little mice, it is.”
Just as expected, Casserta’s was jam packed. Frank ordered a small pepperoni pizza and two spinach pies, and then felt like he hit the lottery when he found a small empty table in the back of the cafeteria-style dining room. While they waited for their food, he asked Ross, “So what’s new in your world, little man?”
“Number 75,” the intercom belted. Frank checked his receipt. Too early, he thought. Can’t be us. He was right.
As if he carried the weight of the world upon his narrow shoulders, the little boy shrugged. “I wish Brian was happier,” he admitted. “He’s always sad.”
Unreal, Frank thought.
“Number 77,” echoed through the dining room.
Placing his hand on his son’s knee, Frank explained, “Brian has some boo-boos in his belly, buddy, but the doctor will figure out what’s wrong. You don’t need to worry about it. He’ll get better.”
“But what if he doesn’t?” Ross asked, peering into his father’s eyes.
“He will,” Frank said, “I promise.”
“Number 78,” the intercom called out.
Though God only knows when, Frank thought. He stayed locked on his son’s gaze until belief registered in the young boy’s eyes.
“Number 79.”
Frank checked his receipt again. We’re up next. He turned his attention back to Ross. “I know Mom and I usually don’t let you drink soda, but you can have whatever you like tonight, okay?”
A spark of joy ignited in Ross’ eyes. “Coke?” he asked.
“Number 80.”
Smiling, Frank stood. “Sure. Two Cokes…one for me and one for you.” He held out his hand and Ross grabbed it.
“Thanks, Dad,” Ross said, as they made their way toward the counter. “And I won’t tell Mom and get you in trouble, okay?”
Frank laughed. “That’s okay, buddy. But we don’t keep secrets from Mom, right?”
“Right,” Ross said, with a subtle shrug.
It was a mild summer evening – the air, warm and sweet. While the world
peacefully slumbered away, Joan kept a strict vigilance over her ailing baby. Throughout the night, Brian’s diarrhea had become so severe that she had to change his diapers five times and his bedding twice.
Just before dawn, she laid him on his belly in the crib and patted his backside until he finally drifted off.
It felt like she’d just closed her eyes when she awoke with the late morning sun on her face. Ouch! Her lower back throbbed in pain. It took a moment to realize that her body was contorted in the chair. She sat up straight and stretched her legs to work out the knot in her back. As she yawned, she spotted Brian lying motionless in his crib, a zombie’s expression on his face. “Oh God!” she screamed and leaped to her feet, nearly tripping from the lack of blood in her legs. Her baby was gray, with big, black circles under his eyes. He’d lost so many bodily fluids through the night that he was scratching at death’s door.
Besides the pins and needles in her legs, all the symptoms of another panic attack – pounding heart, shallow breathing, overwhelming feelings of doom and darkness – ambushed her. But she pushed them away. There’s no time, she thought. Brian’s in trouble and he needs help now!
She lifted him out of the crib and hobbled toward the kitchen phone to call for an ambulance. With trembling hands, she called Doctor Carvalho’s office to inform them of the situation. “Either you admit him, or we’re camping out at the Emergency Room…and we’re not leaving!”
She looked down to find Ross standing there, panicked.
“Brian has to go to the hospital,” she told him. “Go get dressed.”
He ran back to his room.
She then left a message for Frank at work before she dialed her mother’s house. “Ma, Brian’s being admitted into the hospital. I need…” Her strength had finally left her and she broke down in a wounded sob.
“Okay, I’ll meet you there,” Mama promised and hung up the phone.
The sound of an approaching ambulance was the first welcomed wail in weeks.
I need to get dressed, Joan thought, looking down at her pajamas. I’ll just throw on some sweats over these. She then looked down the hall. “Hurry up, Ross!”
While Ross was escorted into the nurse’s station away from the action, Brian was so dehydrated that two nurses had to strap him to a wooden, infant-sized board. They worked at a frantic pace, placing intravenous needles into his arms and legs to feed him the fluids and nutrients that his tiny body screamed for.
“It might be more comfortable in the waiting room,” the younger of the two nurses told Joan.
Joan looked up at her, but never uttered a word. Instead, she squeezed Brian’s hand tighter and firmly planted her feet.
Both nurses looked at each other, the older of the two nodding that it was okay for Joan to stay. After checking his monitor, they quietly left the room.
Mama arrived before Frank. When Joan spotted her, she collapsed into her arms. “I just know something is seriously wrong with Brian, but nobody will listen to me. Everyone just keeps telling me that I worry too much…that I’m overanxious. Frank, Doctor Carvalho…”
Mama pulled her daughter into her chest. “I’m listening, Joan. I’m here and I’m listening.” She nodded. “Everything will be okay.”
With Joan sleeping in a chair on one side of the hospital bassinette and Mama sleeping in a chair on the other, Brian stayed overnight for observation. Although he felt terrible for not staying, Frank returned home to watch Ross.
In the morning, Doctor Carvalho entered the room with Brian’s chart in hand. “I’m going to prescribe a syrup to bind him up.” He wrote out the script and handed it to Joan. “I just signed your son’s release, so you’re free to go home.” He looked her straight in the eye. “Your son will outgrow his digestive problems, Mrs. Mauretti. Hang in there.”
Joan was stunned. She opened her mouth to argue the point, but was interrupted by the busy doctor. “He’ll be fine…and he needs to go home.” The pediatrician turned and hurried out of the room.
As if she were six years old again, Joan looked toward her mother with scared, desperate eyes. Mama merely shook her head, squirming with the same anxiety that her daughter had been suffering. “We’ll figure this out,” she finally said. “We will.”
Long days turned into unbearable weeks. The syrup ran out and the diarrhea returned. Brian depended on Neo Mulsoy formula as his sole source of nutrition for nearly six months, and he never did outgrow the digestive problems. In fact, they became worse. The nights of screaming were endless, with Joan feeling helpless to ease her baby’s discomfort.
Mama finally told her, “Doctor Carvalho is a good pediatrician, but maybe you should get a second opinion from someone younger? I know a younger doctor might lack experience, but he’ll be up on the new procedures and products on the market.”
Without hesitation, Joan contacted a new pediatric practice two towns over, requesting a second opinion on her son’s digestive nightmare. After explaining her son’s condition, the receptionist said, “Looks like I can squeeze you in on Monday afternoon… ummm…two o’clock. Is that okay?”
“Yes,” Joan choked out. “We’ll be there.” She hung up the phone and felt the first ray of light touch their dark world.
With short-cropped hair and crystal blue eyes, Doctor Alexander looked like he’d just graduated from high school. Joan second-guessed her decision until the young man spent more time examining Brian in one session than Doctor Carvalho had in all of their appointments combined. At the conclusion of the exam, he actually took a seat, looked at Joan and said, “So tell me everything.”
Her eyes filled and she nearly hugged him for his genuine concern. “I could explain it, but I’d rather give you this.” She reached into her pocketbook, retrieved Brian’s battered medical diary and handed it to him. “I documented everything,” she said.
He opened the book and read the first two pages before skimming through the rest. With a heavy sigh, he stood and asked, “May I keep it for a day or two to read through it thoroughly?”
“Of course.”
“I’m going to help your son, Mrs. Mauretti,” he promised. “Whatever it takes, we’re going to find out what’s wrong with Brian.”
Joan’s knees nearly buckled. “Thank you,” she whimpered. Thank God.
A slew of tests were conducted on Brian and the initial screens turned up nothing, but Doctor Alexander was a man of his word. He was relentless in his pursuit of answers; for the truth.
The baby gave blood, urine, stool samples and more blood. He squirmed during an abdomen ultra sound and screamed during a scary CT scan. Joan felt pieces of her soul shrivel up and die each time her baby was prodded. The only saving grace was Mama. The old lady never left their sides.
Initially, a diagnosis of Bartter’s Syndrome was made.
“Dear God…what’s that?” Joan asked.
“It’s an inherited defect in the renal tubules that causes low potassium and chloride levels,” Doctor Alexander explained. “We’ll need to start Brian on supplements right away. Let’s set up an appointment for later in the week and discuss in detail. For now, I’ll call the prescriptions into the pharmacy.”
“Okay then,” Joan said, confused.
But the young doctor was still skeptical about the initial diagnosis. For the next few weeks, while Joan prayed that the new supplements would help, he continued his research, reading through current medical journals and making phone call after phone call to colleagues throughout the country. Finally, he discovered several similar cases in Tennessee. A Memphis pediatrician had noticed that three sick babies with strange symptoms had all been depending on Neo Mulsoy as their primary source of nourishment.
According to the Memphis pediatrician, all three infants were unable to gain weight and failed to thrive. He also noticed that all three were being fed the same brand of soy-based formula. To further investigate the possible correlation, he contacted the Center for Disease Control in Atlanta and reported it. The CDC advised that
similar infant cases, scattered throughout the country, had been diagnosed with metabolic alkalosis.
After notifying the CDC and the Food and Drug Administration to report his suspicions about Brian, Doctor Alexander telephoned Joan once again and told her, “Mrs. Mauretti, I hate to tell you this but I think we need to conduct a few more tests.”
And the nightmare continued.
Brian was eleven months old when Doctor Alexander summoned the Mauretti family into his office to deliver the final verdict. Mama insisted that she be there. No one objected.
It was a late winter afternoon, a howling wind knocking on blocks of ice that were once windows. Doctor Alexander sat behind his tidy desk, looking distressed. Joan nearly cried when she saw his demeanor and immediately leaned on Frank for support. Avoiding initial eye contact, the young doctor was clearly having trouble offering his prognosis. He cleared his throat and finally reported, “We’ve discovered that Brian has metabolic alkalosis.”
“He has what?” Frank asked.
“Metabolic alkalosis is a blood disorder that affects an infant’s ability to digest properly and gain weight. It’s caused by a lack of chloride, or sodium, in the diet.”
“So what does that mean for Brian?” Joan asked.
“Several of Brian’s tests have shown some abnormality in the frontal area of his brain.”
Joan, Frank and Mama’s silence begged for the man to embellish. The doctor took another long pause, making Joan feel like her heart was going to explode. She tried to slow down the hyperventilating. It was no use.
“Your son’s development has been severely damaged,” he finally told Joan and Frank directly. “And at this point, I believe it’s irreversible.”
“Irreversible? I don’t understand?” Joan screeched, frightened for her baby boy’s future. She felt so lightheaded that the room began to spin.
Goodnight, Brian Page 3