Vibrant with big blue eyes and brown hair with a tint of red, 5-month-old Madison "Maddie" Wright had reached all her developmental milestones; she could roll over, sit up on her own and hold her head up.
Then, one day in January, her abilities began to decline rapidly.
Within days, she lay limp like a rag doll, unable to lift her limbs and head. Her eyes looked vacant, and her cries sounded labored and guttural.
Doctors soon diagnosed infant botulism, a disease so rare that a physician might see only one case in a career. The disease damages the neuromuscular system, resulting in gradual paralysis.
There were just 122 cases in the United States in 2012, according to the most recent figures from the federal Centers for Disease Control and Prevention. Maryland is among the states with the highest incidence of cases, with eight in 2014. California had the most.
Babies contract infant botulism by ingesting bacterium spores, which harbor in the large intestine where toxins breed. The toxins damage nerves that send the signals to make muscles contract. In turn, the body slowly loses its ability to move.
The disease inhibits vital bodily functions, including the ability to suck and eat. In the worst cases, babies cannot control the muscles used to breathe.
Pinpointing where babies pick up the spores is often difficult, but typically they come from dirt or honey.
Doctors still haven't figured out how Maddie ingested the spores — and they might never know.
Her parents sensed one night that something was wrong, but figured she was cranky from teething. Maddie wasn't eating, but looked like she was hungry.
"I was like, 'Aww, her teeth must be in pain,'" recalled her mother, Tracy Wright of Timonium.
The next day, Maddie's grandmother was baby sitting and noticed that the child's eyes looked droopy and she was so fussy she needed constant rocking. She still wasn't eating or going to the bathroom. Perhaps she was dehydrated.
The nurse practitioner at the pediatrician's office figured the same thing when Wright described Maddie's symptoms by phone that afternoon. But uneasiness gnawed at Maddie's parents.
"We just felt like she was getting weaker and weaker," Wright said.
In the middle of the night, Maddie whimpered and gagged, alarming Tyler Wright, her dad. The girl's head flopped back when her mother tried to feed her and she couldn't grasp the breast.
At University of Maryland St. Joseph Medical Center, doctors tested her for flu and RSV, a common respiratory infection. They also ruled out strep throat and an ear infection. They sent the family home with a syringe for feeding and attributed Maddie's symptoms to teething.
St. Joseph does not typically talk about specific cases, but a spokesman said hospital officials were glad to hear that child is doing well now and wish her and her family good health.
A day after visit visiting St. Joseph, as their daughter's condition worsened, Maddie's parents took her to Greater Baltimore Medical Center, where Dr. Jenna Hammond saw what in the medical world is known as "floppy baby symptoms." Maddie's limbs drooped like a wet noodle and when the doctor lifted her head it flopped back. Her eyes would not dilate and Maddie could not pass a bowel movement, other tell-tale signs of the disease.
The symptoms of infant botulism mirror those of other diseases and infections, but Hammond quickly ruled out other causes.
Guillain-Barre disease, for instance, also impedes muscle movement, but starts in the legs and works its way up. Maddie lost movement in all her limbs at the same time. Anterior horn cell disease has similar symptoms, but they progress much more slowly.
Hammond had seen one other case of infant botulism a year before at GBMC.
An ambulance took Maddie to Sinai Hospital of Baltimore to get care.
One of the main worries about babies with botulism is that they might stop breathing.
"They don't die if they are at a hospital that can support their breathing," Hammond said. "They can't breathe, so we need to breathe for them with a machine."
At Sinai the rooms were equipped with the respiratory machines Maddie needed. Dr. Keisha Bell, medical director of the pediatric intensive care unit, recognized right away that Maddie's symptoms were consistent with infant botulism.
The next several days were filled with emotional ups and downs for Maddie's family. They were relieved when doctors figured out what had sickened their little girl. But their hearts filled with anguish as they watched her lying limply with a feeding tube down her throat. She would whimper in discomfort and sometimes have trouble sleeping. Wright couldn't cuddle her daughter because they had positioned the baby upright in the bed to help her breathe. So she would hold Maddie's hand and rub her forehead.
The disease is treated by injecting patients with BabyBIG, a drug that contains human serum from people who have been immunized against botulinum toxin. The antibodies neutralize the toxin for speedier recovery.
Because the disease is so rare, the drug is not available from the large pharmaceutical companies. California's Health Department is the only place that makes it.
Each treatment costs $45,300, but California health officials said using it saves $103,000 in medical costs by shortening the hospital stay by nearly a month. Babies who do not get the medicine might stay in the hospital for nearly six weeks as compared with about two weeks if given the drug, California officials said.
Maddie was given BabyBIG, and she and her family have started to return to life as it was before.
Before their daughter's diagnosis, Wright had never heard of the disease. Tyler Wright had read an article about it just days before, but it never crossed his mind that his daughter might ever suffer from it.
"We just don't want other parents to go through what we did," Wright said.
Maddie has mostly recovered now. Recently, she sat on her father's knee with little assistance, grasping a teething ring. He put her on the floor and she stacked blocks with elder sister Lexi.
"It was scary for a while," said Tyler Wright. "But we are glad she is OK now."
A story about baby botulism that ran in The Baltimore Sun on Sunday contained an incorrect reference for where Dr. Jenna Hammond saw her first case of infant botulism. The Sun regrets the error.
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