Goodnight, Brian

by Steven Manchester

  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.”

  In the months that followed, Brian’s case was introduced to a world-renowned pediatric specialist located at the Children’s Hospital in Boston. For the family, it was a time of living out of suitcases and eating in hospital waiting rooms. Each of their waking thoughts was filled with the hope that – no matter how slim the chance – Doctor Alexander was wrong. Dozens of additional tests were conducted on Brian, and twice as many prayers were prayed. Tragically, the final result remained the same – ”Irreversible brain damage.”

  Forced to face reality, Joan and Frank returned home to mourn the loss of their son’s normal, healthy future. Mama, however, returned to her cottage by the bay with a different mindset. Before the front door slammed shut, she was already on the telephone, dialing Liz DeSousa, her old floor lady at the textile mill.

  “Hi, Liz, it’s Angela. Do you have any seamstress work you can send my way?” She paused. “Nope. I’m coming out of retirement. I need the money.” She shook her head. “Actually, today’s that rainy day…and it’s pouring out.” There was another pause, followed by a nod. “Thanks,” she said. “I appreciate it more than you know.”

  Mama stepped into her bedroom and took three pills before slowly easing down to her knees. With clasped hands, she prayed, “Father, please bless this family. Forgive us of our sins and have mercy upon our souls. Shroud our children in your angels and protect them from all harm…” The last words were forced through a wave of raw emotion. She paused. “Lord, please bless Brian. I honestly don’t understand why this has happened to a pure and innocent child; why such enormous obstacles have been set before him…but I place my faith and trust in you. And I will lean on that faith, believing that there are reasons that reach beyond our understanding. Please, Father…grant our family the love, faith and strength to help Brian through this difficult world. Let us teach him to walk and talk and live…” The tears flowed feely now. “…to love…and be able to receive our love in return. I ask this in the name of your son, Jesus. Amen.”

  The God-loving woman struggled off her knees and rolled into bed. For a long time, she stared at the crucifix that hung above her bedroom door. “Please let me live long enough to help Brian fly,” she whispered, and then closed her weeping eyes.

  Chapter 4

  Late Spring 1978

  The newspaper reporters were starting to knock, followed by even louder knocks from an army of attorneys. Even a producer from the Geraldo Rivera show contacted Joan and Frank to gather information on the Neo Mulsoy formula that had now poisoned one hundred thirty babies nationwide.

  Joan called Mama and asked, “Is there any chance you can let the boys stay with you tonight?”

  “Of course.”

  There was a pause before Joan went on. “And maybe Ross can stay with you for a few extra days? The phone’s been ringing day and night, and I think it would be nice for him to get some much needed attention.”

  “Sure…but how ‘bout we plan for a week? I’ll talk to Bob and Bev about letting the girls stay over, too. The four of u
s will kick off the summer with a real adventure.”

  “Summer?”

  “It’s early, I know, but after the winter we’ve had…”

  That night, as the bay winds were picking up and the sun was going down, Mama sat out on the three-season porch with her four grandchildren. As they played Parcheesi and shared silly stories, she sat with Brian in her lap. She looked up from the baby and smiled. “What do you guys think about staying at Mama’s for a full week?”

  “YES!” they screamed.

  “That’s what I thought. So what do you think about starting it off with our own little adventure tomorrow?”

  “What adventure, Mama?” Heidi asked, for all of them.

  Mama shrugged, teasing them.

  “Come on, Mama,” Ross whined.

  “Please?” Steph pleaded, knowing that this one magical word could get her almost anything from the woman.

  Mama nodded. “Okay,” she said. “We’re getting up early tomorrow and going on a whale watch.”

  All three kids sprang from their chairs and began to dance. Ross sang, “We’re goin’ on a whale watch. We’re goin’ on a whale watch…”

  “Yes, we are,” she chuckled and returned to her sewing. As she worked, she began their preparation for embarking upon the high seas. “You guys will each have to bring an extra jacket or sweater,” she told them.

  “But it’s starting to get warm out, Mama,” Steph said.

  “True, but it’s still early in the season and it gets cold out on the water, so we have to dress in layers.”

  The kids nodded.

  “You’ll also need hats because the sun reflects off the water and can burn your skin. And be sure to wear your sneakers, so you won’t slip on the deck of the boat.”

  They nodded again.

  “I’ll bring the binoculars and a camera.” She thought for a moment. “But we’ll leave the watch at home.”

  “What about food?” Heidi asked.

  “There’s a galley on the boat that sells sandwiches, drinks and snacks. I’ll bring the money, okay?”

  They all giggled.

  Suddenly, Mama spotted a doe and her fawn standing on the front lawn, looking out onto the bay. She placed her finger to her lips. “Shhhhh,” she whispered. “Look.” She slowly pointed at them. “That’s two of the Lord’s gentle spirits.”

  “Ahhhh,” the kids whispered.

  As both deer grazed, Mama shook her head and whispered, “How folks can hunt them is beyond me.”

  The doe looked up and ran off, the little one hurrying behind her.

  “Okay, guys. If we’re going to tackle the open seas tomorrow, then it’s time for bed.”

  “Awww,” they complained.

  “What do you guys think about having supper at McRay’s Clam Shack tomorrow after the whale watch?”

  All three began their celebratory dance.

  “But none of it’s going to happen until you get a good night’s sleep. Now, go get cleaned up and I’ll be in to kiss you good night.”

  With the kids tucked in and Brian nestled safely in her lap, Mama picked up the local newspaper and read the first of many articles about her grandson:

  Baby Formula is Discovered Toxic and a Rhode Island Family Suffers

  by Steven Herberts, Staff Reporter – Narragansett Gazette

  For more than six months, the Mauretti family of Narragansett fed their newborn son, Brian, a soy-based formula called Neo Mulsoy. What they didn’t realize is that the company that manufactured the formula removed too much chloride from its two formulas, Neo Mulsoy and Cho-Free. As a result, Brian, along with thousands of other babies nationwide, has been placed at risk to suffer poor muscle control, slowed growth, learning disabilities and perhaps even lifelong speech and language disorders.

  After his birth, Brian thrived and gained weight while Mrs. Mauretti breastfed him. Once she stopped nursing and Brian rejected a milk-based formula, however, the Maurettis quickly conferred with their pediatrician.

  Mrs. Mauretti said, “I knew something was wrong right after the doctor prescribed the soy formula. Brian was sluggish and had black circles under his eyes. He would cry for hours at a time and there was nothing I could do to comfort him. And the diarrhea just wouldn’t stop, making him so weak. I always knew there was something seriously wrong, but the doctor just kept telling me that I worried too much.”

  Fed to an estimated twenty thousand infants nationwide, Neo Mulsoy lacked sufficient amounts of chloride, or sodium: an essential ingredient in an infant’s brain development.

  “What babies eat during their first six months of life is crucial and any damage caused usually can’t be repaired later,” Dr. Bernstein, a renowned pediatric researcher, reported. “Infant formula has to have everything a baby needs because it is normally the sole source of nourishment during peak brain development. The brain gets bigger right after birth and by the age of two, it’s close to adult size. Essentially, our future depends on what food we take in as an infant. With the wrong nourishment, the consequences could prove devastating and last a lifetime.”

  Neo Mulsoy’s manufacturer, Syntex Corp., acknowledged that they had reformulated the soy mixture to reduce its sodium content. Unfortunately, they failed to properly test the new formula.

  Syntex, a market giant which sells nearly $400 million in infant products annually, refers to the issue as “an error in judgment.”

  Unable to find answers with the doctor who prescribed the toxic formula, the Maurettis sought the opinion of another local pediatrician. Tests were run and rerun. Initially, a diagnosis of Bartter’s syndrome was made. However, Dr. Alexander had heard about several cases in Tennessee where a Memphis pediatrician noticed that three sick babies all shared the same strange symptoms, and all three were dependent upon Neo Mulsoy as their primary food source. He immediately notified the Food and Drug Administration (FDA) and reported his suspicions.

  “This poor family had suffered terribly and just couldn’t find any answers for their baby’s chronic symptoms,” Dr. Alexander said. “I wanted very much to help them.”

  After more tests, Dr. Alexander diagnosed Brian with metabolic alkalosis. The sodium deficiency within the soy formula had been the cause of the Mauretti’s nightmare, as evidenced in the low chloride concentration within the baby’s urine.

  The FDA, however, permitted Neo Mulsoy to remain on many supermarket shelves for months after it was reported.

  “Neo Mulsoy is not a poison at all,” Charles Woods, an FDA spokesman said. “Only a fraction of the babies who consumed it might suffer long-term issues.”

  Dr. Erickson, deputy chief of the birth defects branch of the federal Center for Disease Control (CDC) in Atlanta, stated, “We now know that the lack of chloride may have caused metabolic alkalosis, which is a blood disorder that affected the infants’ abilities to digest properly and gain weight. We also believe that the babies who were on the soy based formula, but also eating solid foods, are fine. More than likely, they received enough of the chloride to avoid any problems.”

  He added, “It is possible that some infants could suffer permanent brain damage, as well as learning disabilities.”

  The CDC has currently identified one hundred thirty affected babies, with Brian Mauretti at the top of that list.

  According to Dr. Erickson, this is the first time a significant number of babies have suffered a chloride deficiency, and he said it might take years before any real results are yielded.

  Although the Rhode Island Dept. of Health advised that only a small percentage of infants were placed at risk, there has been widespread concern over Neo Mulsoy and its adverse affects. “That doesn’t help my son,” said Frank Mauretti, Brian’s father. “I can’t believe that the company didn’t properly test for the right levels of sodium or that the FDA even allowed it on the market for as long as they did.” He and his wife are determined to help other families ensure that it never happens again.

  At least a dozen lawsuits have been
filed against Syntex, seeking millions of dollars in damages. Several Rhode Island families are involved in legal action as well. The Maurettis are one of those families. “Considering the challenges my son now faces, at the very least he shouldn’t have to worry about money, too,” Mr. Mauretti said.

  Congressional hearings are being called for, proposing laws that would mandate formula-producing companies to submit test results to the FDA before being allowed to release their products into the market. The legislation will also require that a certain amount of specific nutrients be included in all formulas. Currently, such test results are not required to be sent to the FDA and the nutrients – for now – are only “recommended.” The reforms won’t help Brian Mauretti, though.

  At more than a year old, Brian Mauretti still can’t crawl, pull himself up, stand or walk. He doesn’t speak and his future is quite uncertain. He now suffers with metabolic alkalosis and celiac disease, an intestinal problem aggravated by certain foods. With a new change in diet, Dr. Alexander is hopeful he’ll begin thriving. It is not yet certain, however, the permanent effects that this tiny Rhode Island infant will suffer.

  His parents, no doubt, will continue to suffer for years to come.

  Mama placed the newspaper down, looked at Brian who was snoring quietly in her lap and kissed the top of his head. “Uncertain future, my backside,” she grunted. “Enough talk. Our work begins.” She took out her rosary beads, blessed herself and took the very first step down the long, hard road before them.

  Chapter 5

  Early Summer 1978

  Enough time had passed for the shock of Brian’s condition to wear off. Joan had stumbled beyond the grieving process and had given up negotiating with God. She was now at a place called rage. Mama sat with her daughter at the kitchen table, trying to help her make sense of it all. “Maybe Brian’s a test from God?” Mama suggested.

  “Why would God test a little baby who’s never done a thing wrong? Why would He test an innocent child?” Joan snapped back.