WATSON, La. (The Livingston Parish News) — Every night when she goes to sleep, Mallory Brown fears her daughter won’t wake up.
Maddie Faith Brown was born June 10, 2011, following a worrisome pregnancy in which doctors discovered fluid in the left ventricle of her brain, the result of a stroke inside the womb.
During labor, Mallory said her daughter didn’t cry — the first of many troubling signs that have become the norm for Maddie since she entered this world — and she was born with a hole in the roof of her mouth.
Maddie spent her first month inside the neonatal intensive care unit (NICU) at Tulane Lakeside Hospital in Metairie, where doctors gave Mallory a harrowing diagnosis that has been found in only a handful of other people in the world. Even before the genetics doctor began to speak, Mallory feared the worst. She’d soon hear it.
Doctors said Maddie was born with a rare chromosome 10 deletion, and her particular deletion was on the left allele, something only six other people have ever been diagnosed with.
None of the others lived past the age of 4 — a grim message the doctor delivered to Mallory along with other troubling news.
Your daughter will never walk; she’ll never talk; she’ll never be able to care for herself; you’ll be lucky if she is in anything more than a vegetative state of mind.
Sitting there in the doctor’s office, Maddie’s future appeared to be bleak — and brief.
“They didn’t think she’d be capable of anything,” Mallory said.
That message was delivered to Mallory 8 years ago, and in the time since, she’s watched her daughter defy the overwhelming odds that were stacked against her before she was born.
Maddie can walk, run, and even does flips on the trampoline, “or tries to,” her mother joked. She communicates through American Sign Language (ASL), and she receives home bound services through the Livingston Parish Public Schools system as a second-grader.
Mallory, a former elementary teacher, works with her, too — something she was told would never happen before and after her daughter was born.
“She is a fighter,” Mallory said. “She has beaten all odds. She’s a blessing everyday we get to spend with her.”
Despite outliving everyone’s expectations, Maddie continues to endure a plethora of issues stemming from her rare chromosome deletion.
Last November, doctors gave Maddie a new diagnosis — focal epilepsy, a neurological condition in which recurring seizures affect one half of the brain. In Maddie’s case, it’s the left side of her brain, which shuts down the right side of her body.
“She stares into space, her eyes roll back, and the right side of her body tends to get tight,” Mallory said.
Since focal epilepsy is internal, it is much more difficult to detect, Mallory said. Many of the seizures occur when Maddie is asleep, which puts Mallory in a nightly terror that her daughter might not wake up.
Making matters worse is the fact that any seizure longer than 5 minutes can cause brain damage. And since many of Maddie’s seizures occur when she’s sleeping, Mallory isn’t sure how long they’re lasting — or how much brain damage they’re causing.
“It’s a scary thought to have every night,” she said.
In early October, Maddie’s doctor informed the family of a new option — seizure dogs, which are specially-trained dogs that can smell the pheromones the skin secretes during a seizure. The dog would be with Maddie at all times — at school, out in the yard, in her room while she’s asleep — and alert the family anytime she’s having a seizure, potentially saving her life.
Maddie’s doctor said the dog — which will cost $12,500 to acquire and train — is a “hit or miss” option, but at this point, Mallory doesn’t know what else to do. She has set up a GoFundMe page to raise money, and a pair of local businesses have scheduled benefit nights in November and December to help the Watson family.
Sitting in her living room with Maddie at her side during a recent interview with The News, Mallory said she is hoping the community can extend its hand to help her daughter, who has faced more in 8 years than most do in a lifetime.
“At this point, that seizure dog is our only option,” Mallory said.
‘There’s no blueprint’
When Mallory was pregnant, doctors feared she was carrying a stillborn baby.
Maddie suffered a stroke when Mallory was 18 weeks pregnant, which sent Mallory to the hospital with the flu and a 104-degree fever. She had to go back in for checkups every two weeks after that, but nothing seemed to improve.
“Every time we went in, they weren’t sure Maddie was gonna make it,” Mallory said.
Despite early fears, Maddie entered the world full-term at 37 weeks. But doctors immediately discovered a cleft palate, which is caused when the tissue doesn’t fuse together during utero development, and rushed her to the NICU. Maddie also failed her newborn hearing screenings, which classified her as deaf.
Maddie spent 32 days inside the NICU and was forced to use a Haberman Bottle, a specialty bottle for babies with facial or oral problems that hamper their ability to maintain adequate suction for feeding. The specially-designed valve and silicone feeder can adjust milk flow to suit the baby’s needs.
In the NICU, doctors informed Mallory of Maddie’s uncommon chromosome deletion that would affect the rest of her life, which they didn’t estimate would be too long. But since Maddie’s condition was so rare, doctors asked if they could monitor her to learn more about it.
“There’s no blueprint for it,” Mallory said. “Every time we go to the genetics doctors, they ask what’s new from her. They learn from her. She’s kind of paved the way for the genetic world with that.”
However, Mallory gave one stipulation for doctors or therapists who wanted to monitor her daughter: They were not allowed to say anything negative or mention Maddie’s limitations in front of her.
“If they were gonna talk about her diagnosis, they needed to do it outside of the curtain,” Mallory said. “I was very adamant that she wasn’t gonna have the limitations, or know them. I’ve been known to change doctors if they give her a limitation.”
Mallory recalled one physical therapist bringing in a book about walkers, a notion Mallory immediately shot down — and a decision that ultimately proved correct. Despite being told she’d never walk, Mallory watched Maddie take her first steps at 26 months old inside their Metairie home.
“Very wobbly like any toddler would be, but she walked,” Mallory said.
‘I was losing her’
One morning last November, Maddie signed to her mother that she had fallen out of bed in the middle of the night.
Visibly disoriented, Maddie couldn’t tell her mother why it happened, but Mallory’s “mommy gut” knew something was wrong.
They went to the pediatrician’s office, where Maddie had an MRI and a CT scan. Maddie was officially diagnosed with epilepsy in January, adding another to the long list of neurological issues she now has to deal with.
Maddie’s epileptic seizures grew worse as time went on and reached a high point in March, when she was having “15 to 20” seizures a day and sleeping 23 out of 24 hours. Maddie saw at least six neurologists in Louisiana during that time, but no one could give a clear-cut solution. Most said she needed more medicine — though Maddie was already taking five different types of medication a day — but even that didn’t work.
Maddie slowly began to “regress in everything,” including her fine motor skills, physical growth, and sign language skills.
“I thought I was losing her,” Mallory said. “Everything has just gone backwards.”
After 72 phone calls in a week’s span, new hope came when Maddie was accepted into Texas Children’s Hospital in Houston in March. After running his own tests, her new doctor said Maddie suffered from focal seizures in six different parts of her brain. The most he had ever seen was three.
“She’s got what her doctor called ‘constant misfiring,’” Mallory said. “Her brain is always on active alert.”
Maddie’s doctor took one look at her medication and told Mallory, “it will kill her if she stays on it.” After some tweaking, they settled on a 26-week titration schedule of a new seizure medicine that initially “worked great.”
Maddie stopped having seizures in the first week of June and went seizure-free for 98 days. Things were finally starting to look up, and that August, Maddie would start second grade at Walker Elementary while Mallory would return to teaching a South Fork Elementary.
Then the first day of school arrived, and everything came crashing back down.
‘This dog will help’
On the first day of school in August, Maddie had six seizures in the car. After three days, Mallory pulled Maddie out of school as the seizures persisted.
Since then, the epileptic episodes have been inconsistent, but they haven’t stopped. Maddie will go for a week without having a seizure, Mallory said, and then they’ll return in full force. As a result, they’ve had to constantly adjust her medication since August.
“The neurologist said that even if her shoe size grew or if she gained a pound or two, it could be enough for someone with epilepsy to have seizures again, so they have to constantly monitor her medicine,” Mallory said.
In early October, Maddie slept for 12 hours straight through the night, which Mallory said was “unusual for her.” Mallory tried to wake her daughter up, but that took longer than normal. When Maddie finally woke up, Mallory could see something was wrong.
“She walked down the hallway and her whole right side was stiff,” Mallory recalled. “Her right arm was completely stiff, her neck and head were leaning toward her right shoulder, and she was dragging her right leg to get to the table. I knew something happened.”
After another CT scan, it was determined that Maddie suffered what’s known as Todd’s Paralysis, a neurological condition experienced by people with epilepsy in which a seizure is followed by a brief period of temporary paralysis. It took Maddie almost two days to recover.
It was around this time that Maddie’s doctor recommended getting a seizure dog, which has become the family’s last hope of being able to detect the seizures.
After some research, Mallory eventually found a breeder in Mississippi: Golden Valley Doodles. The owners there have hypoallergenic dogs that don’t shed — a necessity for Maddie — and right now, Mallory said they’ve settled on an Australian shepherd and poodle mix.
Mallory’s youngest son has already seen a picture of one of the dogs and named him “Oreo” for his black and white fur.
“We’ve named the dog, so we have to get him,” Mallory said with a laugh. “It’s sitting there waiting.”
The dog will cost roughly $2,500, but the family will need another $10,000 for the trainer, which will be Varnado K9 in Franklinton. Mallory said once she pays the trainer’s deposit, the dog can immediately start the one-year training period.
“The sooner we can get the deposit, the sooner they can begin training,” she said. “[Golden Valley Doodles] is holding the dog for the moment, but if someone gets the dog before we can, we would have to wait for another litter to be born.”
So far, two benefit nights will be held over the next two months to help the family with some of the costs.
The first will take place on Nov. 4 at Papi’s Fajita Factory in Watson, which will donate 15 percent of the night’s proceeds to Maddie’s seizure dog.
The second will take place Dec. 8 at Gotham Archery in Central, which will host a jambalaya luncheon in addition to archery classes at 1 p.m., 3 p.m., and 5 p.m. Tickets for the lunch and archery classes can be purchased by emailing firstname.lastname@example.org. One hundred percent of those proceeds will go toward Maddie.
“As parents, we all want our kids to be independent,” Mallory said. “I believe this dog will help my daughter with that.”