JONESBORO — After their son was diagnosed with a rare genetic condition, a local couple is trying to bring awareness to an illness known as Moebius syndrome.
Paula Lowe said she had a completely normal pregnancy.
“I worked right up until two days before I delivered,” she said. Paula and her husband Karl own Roots Restaurant at 303 S. Main Street in Jonesboro.
When baby Logan was born on Dec. 4, Paula said doctors quickly realized something was wrong.
“They thought he had a collapsed lung,” Paula said.
Doctors transported the baby to LeBonheur Children’s Hospital in Memphis where a battery of tests revealed a diagnosis.
“The cardiologist told us he had no pectoral muscle on his left side ... (and) his heart was located on his right side,” she said, noting the condition is known as dextrocardia.
Paula said Logan’s doctors told her he has a strong, healthy heart, but the couple soon learned their newborn baby’s heart condition was a direct result of a rare disorder called Moebius syndrome.
Dr. Enrique Gomez, a neonatologist with St. Bernards Medical Center, said Moebius syndrome is a genetic disorder that affects the 13th chromosome.
“One in 50,000 children are born with this condition,” he said, adding that a lot of times it is just a spontaneous mutation of the chromosome.
Logan has been diagnosed with other health issues as well, all directly related to his condition. He also has craniosynostosis, a condition where the bones in the skull are fused together, mixed sleep apnea, and an allergy to a protein called casein, which is found in milk products.
“Only 1 percent of the population has Moebius syndrome,” Paula said, noting that means just 20 babies out of 2 million are diagnosed with the disease.
After Logan was diagnosed, doctors told the couple they both could carry the recessive gene for the syndrome.
“They told us if we had five children, one of them would have the syndrome,” she said.
Karl said the couple’s main goal is to begin to create awareness about Moebius syndrome. “People are familiar with autism, and Down syndrome, but no one has ever heard of Moebius,” he said.
Paula said specialists at LeBonheur say the first year is critical for their son as doctors work to determine the full extent of damage the syndrome has caused.
“He has dysphagia where he can’t swallow, and his facial paralysis is unilateral,” she said, noting that is a blessing in disguise. “Most people with Moebius syndrome have complete facial paralysis and cannot close their eyes. Logan seems to be more mobile on his left side; he can blink, he can close his eyes, and he can smile completely.”
His pediatric team at LeBonheur had to install a gastrostomy tube in his stomach, so he can be fed, and use a feeding pump to do so.
Logan did get to spend a few short days at home after spending his first 42 days of life in the NICU at LeBonheur, but it wasn’t long before he returned.
On Feb. 1, Karl went to the post office, and Paula stayed at home with Logan.
“I usually hook him up to his little (feeding) machine and he falls asleep,” Paula said, noting when she looked down at her son, he flinched, then became red and unresponsive. “He started turning purple. I put him on the floor and did CPR.”
It was an emotional moment for Paula as she relived the trauma of that day, all the while her husband Karl was calming her in the background, telling her what a great job she did saving their son’s life that day.
“Two minutes passed, and he was breathing again,” she said. “I called my husband and told him we needed to go to the hospital.”
Logan was again admitted to LeBonheur, first in the NICU, and then in the PICU.
“He was diagnosed then with obstructive apnea because his larynx is too narrow,” she said.
Paula said Logan has had one surgery to stretch his airways but will have to have several more. Logan will also face brain surgery to create an opening in his skull to allow for growth.
Right now, Logan is struggling to keep his oxygen saturation levels stable.
“They have him on a CPAP machine and a small cannula,” Paula said, but the couple may soon have to face the decision for their son to have a tracheotomy, which would help him breathe. “Currently we are working to get him to breathe on his own. He stops breathing 140 times every hour.”
Meanwhile, the couple is trying to balance their time between their business and their 2-year-old son Liam, while making time to get to Memphis to be with Logan.
They also face the challenge of mounting medical bills. Paula said just one can of formula, which is the only kind of milk Logan can drink, costs the couple $300.
“We only have four cans,” she said.
Karl said Medicaid won’t pay for the baby’s anesthesia and each time he has to be put under for a procedure, it costs the couple $2,000.
“We just ask for the community to please support the restaurant,” Karl said. “We also have a GoFund Me page set up, called Baby Logan Medical Expenses, and also a blog called Little Bear Logan on Facebook.”
Paula said the blog on Facebook is her attempt to pave the way to a better future for her son.
“Our goal is to have him in a regular school,” she said, “so if we pave the way and bring awareness of the illness maybe he won’t have such a hard time in the future.”
Paula said resources on Moebius syndrome are rare.
“I have had other mothers reach out and tell me that being CPR certified is a must with these children,” she said. “They tell me they have had to resuscitate their children often.”
Paula said there is no discharge date for Logan in the foreseeable future.
“He will be 3 months old March 4, and he has only spent two weeks at home,” she said.