An excerpt from
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?”
“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.
Doctor Alexander shook his head. “It means that Brian will never walk.”
“Never walk?” Frank repeated, his face instantly bleached to white.
“I’m sorry, but we don’t believe he will.” He scanned the reports in front of him and took another deep breath. “It’s also doubtful that Brian will ever talk or communicate effectively.”
Joan looked toward her mother again, her terrified eyes begging for help. Mama got to her feet and took a defensive posture.
Without acknowledging the old woman, the doctor went on, “Brian may never be able to do what normal children – or adults – are able to do.” He paused again. “We believe it may have been caused by the Neo Mulsoy formula. The low chloride concentration in his urine is substantial proof that the sodium deficiency within the soy formula has been the primary cause of Brian’s medical problems.”
While the doctor tried to explain further, Joan wailed, “Oh God, what did I do to my boy?”
“You didn’t do anything,” Doctor Alexander and Mama vowed in unison.
The doctor backed off, allowing the old lady to take over. She grabbed her daughter’s panicked face. “This wasn’t you,” Mama promised. “You did nothing wrong!” She shook her head. “And this is only one opinion. There are other doctors…more tests.”
While Joan wept sorrowfully, Frank rested his hand on his wife’s leg and stared helplessly at the doctor. “But Doctor Carvalho prescribed the formula to Brian,” he muttered in a wounded voice, as if it would make some difference.
“There’s no way he could have known at that time that it would have caused your son harm,” the man replied.
“You say he’ll never walk?” Joan cried.
“Sorry, but I really don’t believe he will,” the doctor answered, sadly.
“Or talk?” Joan gasped, trying to breathe.
The man slowly shook his head. “I have to believe that the damage to your son’s frontal lobe will prohibit any real speech.”
As Joan struggled to continue her panicked line of questioning, Mama shook her gray, curly head. “That’s crap!” she said, loud enough for everyone to hear.
The young doctor turned his attention to her. “I realize that this is…”
“You’re wrong!” Mama insisted, taking a step toward him.
“Excuse me?” he asked. “I know this isn’t easy to hear, but…” The man shot her a kind smile, but Mama wasn’t swayed. “I’m so sorry, but Brian is now mentally disabled,” he concluded.
“No. I don’t think you understand,” Mama replied, staring straight into his sapphire eyes. “Our boy is going to walk. He’s going to talk. He’s going to ride a bike, swim, and learn to do everything that any other kid can do. It might take a little more doing, but I guarantee it!”
Although it was the slightest movement, the doctor shook his head at her foolish hope. “Believe me, I wish that were true, but…”
“Wishing won’t have anything to do with it. No, this’ll take faith and determination, and the love and support of our entire family.”
Unable to do more, Doctor Alexander turned back to Joan and Frank. “I’m here for whatever you need.”
“For what?” Frank barked, his shock turning to rage. “It was a doctor who ruined my son’s life!” By this point, Joan was nearly rolled into the fetal position, her body paralyzed from the devastating news.
Doctor Alexander nodded compassionately and, handing Frank a piece of paper, concluded, “This is a different soy-based formula that you folks can start Brian on, as well as an additional chloride supplement. We’ll talk about solid foods and other alternatives during his next visit.” Patting Joan’s shoulder, he said, “I’m so sorry,” and stepped out of the room.
Mama watched the back of him disappear down the long hall and nodded herself into the slightest smirk. In that one moment, she realized her life’s mission had just begun.
While Joan sobbed and convulsed, Frank held his head in his hands, trying to process it all. Mama grabbed her dejected daughter’s face again and forced Joan to look into her eyes. She spoke sternly. “Joan, you listen to me right now. That doctor’s wrong! Brian’s going to write his own story. He’s going to sing his own song and no one’s going to sing it for him. It’s his life and it’s between him and God…not some fool doctor who’s had so much schooling that he’s forgotten the power of faith.”
Joan shook her head. “But, Ma…” she sobbed. “You heard him. Brian’s brain has been damaged.” The final word made her wail out in pain.
“Your Nana said that she had such a difficult time bringing me into the world that she nearly died. And the horse doctor who assisted in the birth told her that I just wouldn’t be right.”
Frank looked up from his spell and began to quietly weep.
Mama nodded again. “Yep,” she said, with burning determination. “Brian’s going to be as right as rain. I guarantee it. Only God knows how…but that’s enough.”