Lexie is relaxing in her mama’s lap when a nurse arrives and leads them to the second floor of Children’s Healthcare of Atlanta and eventually to Room 16.
It is just 7:30 a.m., one hour since Amy Delaney made the nearly two-hour drive from her home in Calhoun to Children’s, a place so familiar she could navigate its corridors blindfolded if she had to.
Lexie, too.
Taken together, Lexie and five of her siblings have been here more than 200 times in the past year alone. With six children, ages 10-15,with various physical and developmental disabilities, hospital visits are unavoidable.
On this day, Lexie will undergo her 30th surgery, a feat so monumental Amy Delaney thought it only right her little girl get to do something funky with her hair.
The cute pixie cut in a pink flamingo shade is a big hit with her doctors and nurses who arrive in 10-minute intervals, offering compliments and comfort.
A nurse to record her vitals. One to review her medical history. Then the anesthesiologists and finally Dr. Colin Brady, the pediatric plastic and craniofacial surgeon who will perform Lexie’s operation, a nearly five-hour procedure to help her breathe more easily and to prevent her face from growing diagonally.
Lexie, age 11, is one of two Delaney siblings born with a craniofacial condition known as Treacher Collins syndrome, a condition that affects the development of bones and other tissues of the face and the subject of the 2017 box-office hit “Wonder.”
Like others with the syndrome, Lexie’s eyes slant downward, and her ears are small and unusually formed. She wears a hearing aid and, though she talks a mile a minute, has difficulty opening her month.
Her brother Malachi is also 11 and also has Treacher Collins. Grace is 12 and moderately autistic. Logan is 15 and has Glanzmann’s disease, now in remission. Jeremiah is 11, asthmatic and has attention deficit hyperactivity disorder. Avery, 13, is autistic with a traumatic brain injury he suffered during a severe beating while still a toddler.
Long before any of them, there were three biological children Amy and her husband, Derron, had from previous marriages; and adopted son Luis, whom Amy met in 2012 when she returned to college to get a bachelor’s degree in religion.
Amy and Derron hadn’t planned on adopting so many children and certainly not six with disabilities. It just happened..
A new path unfolds
When the couple married in 1997, Derron had a 4-yearold son from a previous marriage. Amy had a 4-year-old daughter and a 7-year-old son.
Naturally, they wanted a child together because, as Amy Delaney put it, “that was what was supposed to happen.”
But at age 29, Amy learned she’d gone into menopause. Over the next five years, they purchased eggs and tried in vitro fertilization. After the fourth try in 2003, they finally gave up. There would be no pregnancies.
“It was devastating,” Amy said. “And very expensive. If we had listened to God and had an open heart much sooner, we’d have a lot more money right now.”
Instead of listening to God, the couple decided to save for an overseas adoption. Getting a healthy kid in the U.S., they believed, was out of the question.
Then one day in 2004, someone asked if they’d ever considered a domestic adoption.
The answer was no.
“That’s when it was brought to our attention, that there were kids available for adoption in the U.S. through the foster care system,” Amy said.
Soon thereafter, the Delaneys happened upon a pamphlet for Lutheran Services of Georgia and called the agency.
If they wanted a young child, Derron Delaney said, that was the way to go.
In 2005, they met a little boy named Logan, already in foster care, already with a multitude of problems.
He was nearly 3 but he didn’t walk or talk. He couldn’t feed himself. He wasn’t potty trained.
“We were ecstatic,” Amy Delaney said.
Just as they were about to bring him home, doctors discovered Logan had Glanzmann’s disease, an extremely rare condition in which the blood doesn’t clot properly. He needed a bone marrow transplant, and there was a good chance he might not survive.
The social worker withdrew him from the adoption pool.
Three weeks later, the Delaneys got another call. A newborn had been abandoned. Were they interested in adopting?
Two weeks after bringing Grace home, the Division of Family and Children Services, aware that both Amy and Derron were paramedics, called again.
Logan was still sick but doing much better. Did they still want him?
Amy and Grace moved into Children’s Healthcare to be with Logan while he waited for a badly needed bone marrow transplant.
Amy started to notice children alone in the hospital’s hallways. When she asked about their parents, a nurse told her that some had to be at work, but the vast majority of the children were alone because they were wards of the state.
That surprised her.
“I thought any time you went to the hospital and you were a minor, you had to have an adult present,” she said.
By then, Amy was a 38-year-old medic, but she couldn’t imagine facing cancer or any illness alone. It didn’t seem right that children had to.
That was the moment Amy and Derron, now both 50, decided they’d only adopt special needs kids.
“Everyone that came into our house after that we ended up adopting,” Derron Delaney said. “Honestly, I think it was just supposed to happen.”
Hard to say ‘no’
In 2005, just weeks after taking in Logan, the Delaneys learned doctors had a marrow donor, and Logan became only the fourth person in the U.S. to receive an umbilical cord transplant. In the event of rejection, Amy was advised to stay close by. She and Grace moved once more into a nearby hotel while Derron worked to keep a roof over their heads.
It was touch-and-go for months. Logan had experienced regular brain bleeds, but after six months, Amy got the go-ahead to take him home.
At the end of 2006, Logan was officially adopted, becoming the fourth adopted child in the Delaneys’ blended family.
From there, the order gets confusing. What remained was they wanted to adopt children with special needs.
About that time, the couple decided to become respite providers for other foster families in need of a break.
That’s when Jeremiah, just 10 months old, arrived.
Amy was beginning to realize why kids end up in foster care. They were abused. Neglected. And deserted.
“They all have horrible stories,” she recalled.
Jeremiah, weighing just 13 pounds, was severely malnourished. He had asthma and required multiple surgeries and therapies to progress.
The Delaneys had barely gotten him settled in when they got another call. Avery had been so badly beaten, he suffered a brain bleed and broken bones.
About 14 months later in 2008, they got another call. Lexie’s birth mom had left her unattended. Could they take her for the weekend?
Not only did Lexie have a facial deformity they failed to mention, she had a tracheotomy and was deaf, too.
The weekend turned into a week, which turned into two weeks. Her mom had gone into drug rehab, but they’d located her father, who took custody of her. Six weeks later, the authorities called again. A court hearing was set to determine if the father was capable of caring for a child with Lexie’s health problems. Could the Delaneys be there?
The court gave the Delaneys emergency custody of her. In the winter of 2008, she became the Delaneys’ seventh adopted child.
The couple figured that as long as they could keep up with who was being potty trained and who was in driver’s training, they could do the rest. Whatever that was.
The phone kept ringing, and the Delaneys kept answering. Their hearts, including the older children’s, just wouldn’t say no. They knew their parents wanted to adopt, and they were behind it 100 percent. They didn’t hesitate to submit to required health exams and interviews needed to move each adoption along.
“Teens are known for being self-absorbed,” Amy said. “I’ve been blessed that our children have always had empathy and compassion for other people.”
Adapting to growth
As news of their growing family spread, friends and family rallied around them. Amy quit her job managing a department store while Derron worked around the clock to support their growing brood.
Their household expenses had grown exponentially.
“Every time I’d think we weren’t going to make it, I’d remember the parable of five loaves of bread and two fishes, in which Jesus fed 5,000,” Amy said.
Four of the children, who were adopted through foster care, are covered by Amerigroup until they reach age 18. The other two, who were adopted through private agencies, are covered by Medicaid.
In addition to having to figure out how to feed all those children, they realized their three-bedroom home was bursting at the seams. The cars, too. For the first 10 years, she and Derron drove two cars everywhere they went. Vacations were nearly impossible. In addition to needing three hotel rooms, they had to lug medical equipment, too.
It wasn’t the family they’d dreamed of or even imagined, but it felt right. It didn’t matter that there was a lot less time for the two of them. They were finally listening to God, fulfilling his commandments for their lives.
Chief among them, they believe, is to love God and then love others as themselves, on which hang all the commandments.
They eventually moved into a larger home, increasing the bedrooms by two, and purchased a 15-passenger van and two Suburbans to get around town and to doctor’s appointments.
The toughest thing about their lives, Derron said, isn’t their children’s disabilities, it’s coordinating everyone’s schedule.
“Just keeping up sometimes is a chore,” he said. “After that, just making sure everybody gets individual attention.”
It has helped that Derron has supportive colleagues in the movie industry, where he works as a paramedic.
“They take care of me so I can manage what’s going on at home,” he said.
Meanwhile, their home continued to grow.
Avery was a puzzle. He didn’t talk or express emotion. He didn’t penetrate the Delaneys’ heart like the other children.
“It’s a lot easier to adopt them when you smile at them and they smile back, tell them you love them and they say it back,” Amy said. “We had to learn to love Avery.”
Lexie helped. As she started learning sign language, Avery started to notice, mimicking her movements. Suddenly, he was laughing and crying. And when he realized he could ask for a drink and get it, he started to talk, too.
“He can only say a couple of words at a time, but he talks all the time now,” Amy Delaney said.
Just when they thought they were done, there was a group home closing because of lack of funding. They had 22 kids who needed to be placed.
Malachi, born in 2006, was one of them. He had a feeding tube and Treacher Collins like Lexie, only his face was more deformed.
Again the state sought out the Delaneys.
“We met him and he was the most expressive, charming, adorable kid,” Amy said. “Everything he needed we were already doing for Lexie — already going to occupational, physical and speech therapy, already seeing an ENT because she was deaf and so was he. We were already going to a pulmonologist for a trach, and both children had feeding tubes. Our family was already learning sign language, and they were so close in age. It was just a matter of loading up two kids instead of one.”
An important day for Lexie
On this June morning, it is just Amy and Lexie.
An hour after they settle in a room, Dr. Colin Brady arrives with a nurse in tow.
He takes a seat on the bed beside Lexie and in a quiet, soothing voice launches into his plans for the surgery she is about to undergo. It will be a difficult one, he tells her, but he will not do anything that will put her life in jeopardy.
Amy repeats what Brady tells Lexie in her own words.
“Do you have any questions?” Brady then asks Lexie.
“You always ask questions after he walks out,” Amy reminds her. “You need to ask questions when he’s here.”
Lexie knows pieces of metal will be placed in her face, making her appear even more disfigured.
“How long will the pins be in?” she asks.
Sometime around 9 a.m., a nurse returns with a sedative for Lexie.
“When you start to feel dizzy, pat my hand,” Amy whispers to her little girl.
After 29 surgeries, Lexie knows she will feel a lot of pain when she wakes up. This is a scary time for her.
She soon pats her mother’s hand, and Amy leans over, kisses her forehead and whispers, “I love you.”
“I will be here when you wake up.”
At 10 a.m., Lexie is wheeled out of the room and into surgery.
According to Brady, Treacher Collins syndrome stems from an abnormality in a specific gene that results in abnormalities of the skin, soft tissues and bones of the eyes, ears, cheeks, jaws and skull. Infants with TCS exhibit underdeveloped or absent cheekbones, causing this area of the face to appear flat or sunken. The bone of the lower jaw is incompletely developed, causing the chin and the lower jaw to appear abnormally small like Lexie’s. The severity of the disorder varies from patient to patient. In the most severe cases, deafness and feeding and respiratory problems may complicate early life.
Lexie has a combination of bony and soft tissue abnormalities of the face that also affect the size of her airway, Brady said. The position of the facial bones and jaws specifically lend toward sleep apnea, recessed cheeks, and inappropriate positioning of her teeth.
The goal this day is to improve the positioning of her cheekbones, the angle of her upper jaw, the location of her upper teeth, and the space in her upper airway to relieve her sleep apnea and allow Brady to safely remove her tracheotomy.
To do that, he makes cuts in her cheekbones, nose, lower eyes and upper jaw, enough to allow him to move the bones to a new position and place a device under the skin that over 10 to 14 days will slowly move the bones as a unit to a better and more natural position.
Four and a half hours later, he was done. Lexie did great.
“Lexie has been a rock star,” he said days later. “She takes on every challenge with a positive attitude and maturity that is well beyond her years. We are all very proud of her.”
On July 20, Lexie completed the movements of her facial bones. She underwent rehabilitation at Scottish Rite to get back to full strength.
Soon she will undergo yet another surgery to move her lower jaw and improve the size and shape of her lower airway and the position of her lower teeth.
Brady is optimistic. His patient is one of the bravest little girls he’s ever had the honor of caring for. She has a supportive family and expert care.
Brady is grateful he’s been a part of Lexie’s journey.
“We look forward to seeing what undoubtedly great things the future has in store for her,” he said.
And the rest of the Delaneys.
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