Formerly conjoined McDonald twins' amazing journey home
5:09 AM, Sep 7, 2017
8:03 AM, Sep 7, 2017
Nicole and Christian McDonald entered their boys' hospital room for a final time.
In a corner room of Blythedale Children's Hospital in Valhalla, New York, Jadon and Anias had recovered for the past nine months of extensive rehabilitation after the surgery to separate the formerly conjoined twins.
The two boys captivated millions around the world when they underwent a 27-hour separation surgery in October. The twins, who were 13 months old at the time, had shared 5 centimeters by 7 centimeters of brain tissue, making the complicated surgery that much more difficult.
Jadon and Anias had known the world only from lying on their backs, and the surgery set them back to infancy in terms of speech and gross motor skills. In recovery, they learned how to use muscles they never knew they had. Just sitting up was a monumental task.
Doctors feared that Anias might never be able to use his right side. Yet in rehab, he's begun using his right hand almost as much as his left.
Their final day at Blythedale is one Nicole and Christian had dreamed of since before the surgery. The family transported their lives from small-town Illinois to New York in February 2016 to prepare for the procedure.
The boys had been in the hospital almost constantly since then, first at the Children's Hospital at Montefiore Medical Center, where the surgery took place, and then Blythedale. They turn 2 years old on Saturday.
Gone are the fears of the surgery itself. The hour-long trips to the hospital. The longing to have their family under one roof.
Nicole lifted Anias from his hospital crib. "Are you ready to go?" she asked, cradling him close to her heart.
Across the room, Christian picked up Jadon and told him that he'll soon "get to hang out at home."
"You get to ride in a minivan," he said. "You get to be a normal little boy."
The boys were placed in a double umbrella stroller. Jadon sported a white helmet with a red Velcro strap; Anias wore a helmet with a blue stripe.
Dad pushed their stroller down the hall. Mom and their 4-year-old brother, Aza, accompanied them.
It was time to go home. Finally.
'God works through people'
The McDonald home teems with activity. Nicole and Christian purchased the home in foreclosure in the spring. Nestled in New York's Orange County, with views of the Catskill Mountains, it was in need of extensive renovation.
Christian worked almost around the clock to get it ready for his boys, ripping off siding and tearing up old carpet. A few weeks ago, four guys from Texas who are affiliated with their church showed up to help. In just 2½ days, they built front stairs, installed siding, replaced windows, refurbished the laundry room and renovated a bathroom.
Most important, they ran an electrical circuit to the boys' room to handle all of their specialized medical equipment. Anias will need a feeding tube, as well as a breathing machine and a suction machine to aid in his care. The family will eventually have home nurses for 16 hours a day.
Less than 24 hours before the boys' return, the split-level ranch home seemed more like the site of a renovation reality show, with Christian burning the midnight oil to complete the work. Aided by his minister and two church members, he pulled up carpet in the basement playroom and laid tiles.
On the wall, a quote from American philosopher and psychologist William James: "The greatest discovery of my generation is that a human being can alter his life by altering his attitude."
Upstairs, Nicole prepared a chili feast. She traveled back and forth between the hospital and home so much, it's rare to be able to cook dinner.
She had to fight back to tears while slicing onions. The tears, she said with a laugh, are "not from the onions." They're for the overwhelming excitement at the idea of bringing Jadon and Anias home. Earlier, she'd walked through their room. Their newly assembled cribs waited to be occupied.
"My kids have never been home separate," she said. "I'm so excited, I can hardly stand it. It feels like it's not even real. We've never been home and each held a kid. It's going to be awesome."
Christian joined her in the kitchen to reflect on the monumental journey the family has been on for the past year. He said the boys have been in hospitals for so long -- nearly 1½ years, counting the months before the surgery -- that feels like, in a weird way, Jadon and Anias have been wards of the hospital and less his own children. "It's almost like I get to be a dad to them for the first time," he said.
That's not to say he's not appreciative of everything the hospitals have done, from the surgeons at Montefiore who operated on them to the staff at Blythedale who worked tirelessly to get Jadon and Anias to this point.
"I'm feeling pretty excited getting to hold my kids sitting on my couch and actually just hold one at a time," he said. "It's like I have my sons now, you know?"
The last time the boys were home, Jadon and Anias were still connected at the head. Any time their parents needed to move them, they had to carry them together in a carefully choreographed way.
The family lived in a rental home in the Bronx. Now, they have their own home. They want to push the boys in strollers to the park. They want to take them to the local pizza joint. Simply put, they just want to be a family.
"I can't wait to show them the world," Nicole said.
More than anything else, Christian said, "I'm just so excited for them. I'm sure they just want to come home and be with their family, and we want them to come home."
Both parents express gratitude for everyone who has reached out to them and prayed for their boys. Devout Christians, the parents say their faith has sustained them during this arduous journey.
"Times like this really shows us that it is God's help," Christian said. "God works through people."
Added Nicole, "This strengthened my faith. If I didn't have God in my life, I would not have made it."
A member of their church donated their minivan. Strangers generously gave more than $340,000 to the family's GoFundMe account -- money that has supported the family the past year, aided in the purchase of their home and helped pay off huge medical bills.
But the parents say they are prepared to handle whatever comes next.
"We had miracle upon miracle upon miracle happen with these children to get them to where they are now," Nicole said. "We have our children coming home."
'Motivated' boys ready to tackle the world
The boys' road to recovery was made possible thanks to the dedicated staff at Blythedale Children's Hospital. In additional to physical therapy, they received speech and occupational therapy five days a week. The boys will still return for three days of therapya weekfor the foreseeable future.
Mara Abrams has worked with Jadon as his physical therapist and says his tenacity has been awe-inspiring. He loves books, he loves toys, and he loves life. She said he's learning to pull himself up on furniture and walking sideways along the furniture with a bit of help. He's nearly crawling, too.
"The first step in a wonderful life is about to happen," Abrams said. "It's just so great that the hospitalization is over."
Jadon's progression is nothing short of amazing, she said. It was difficult and intimidating when he first arrived because he'd only known life from lying on his back.
"All of a sudden, the whole world changed for him," she said. "I know it took so much time for him to visually accept that the world wasn't meant for him to lie down, that he had to come into a vertical position and figure out this is what the world looks like."
But with help, Jadon took off. "Every day, he's always been a cheerful, happy guy. He throws his arms out; he squeals with delight. He loves going to therapy. I'm just so happy they're going to have real-life experiences."
Her favorite moments are many, like the time he took a few steps toward his occupational therapist and grinned from ear to ear. Or the time he was on a tricycle working on reciprocal leg motion, and he suddenly saw his mom. "We started to go towards her. She squealed with delight, and he did. It was really wonderful."
Anias has struggled the most, both before and after the surgery. With twins joined at the head, one tends to be more dominant. In this case, Jadon was the dominant one, whose body worked overtime to keep both of them alive. Anias has struggled with breathing and other issues, compared with his brother. Anias's body also rejected the skull cap that had been placed under his skin to protect his brain, and it had to be surgically removed. He will probably undergo another surgery for a new skull cap when he is 7 years old. Until then, he will wear a protective helmet.
But Anias' gains have been tremendous too, according to his physical therapist, Maureen Carroll. Although he is a few months behind Jadon's progression, he has made giant leaps.
When Anias first came to physical therapy, Carroll said, he was scared of people and using only his left side. Now, he's kicking both feet and routinely using his right hand to stick his foot in his mouth. He's become social with his twin and older brother.
Anias, who eats via a feeding tube, is 4 pounds heavier than Jadon now, weighing in at 28 pounds.
"He wants to play. He wants to move -- and that's amazing," Carroll said. "The child who was afraid of people at first now wants to interact with the world. He's motivated, and that's huge."
What excites her the most about Anias, she said, is that "he's excited to be here, and he's excited to move."
"That's what makes my job so easy," she said. "I'm just going along for the ride. He's the one who is the hero and the miracle."
Making the family whole
The silver minivan pulled up to their home early Friday evening. Mom and Dad got out and prepared for the big moment. On the hourlong ride home, Jadon played with a ball while big brother Aza jabbered for much of the time. Both boys laughed and laughed.Anias was oblivious, asleep in his seat.
The family dogs, Taz and Tyson, greeted the minivan to inspect the new arrivals. Taz, a tiny Maltese/toy poodle mix, leaped into the back of the minivan and sniffed around. His tail wagged at the sight of the two boys.
Nicole gingerly carried Anias up the front stairs. Christian fetched Jadon and, on their way up the steps, pointed out his renovation handiwork to his son: new siding, stairs and windows.
"I put you in a new window, Jadon, so you can have a clear view," he said. "This is it. This is your home."
Soon, the home buzzed with the hectic life of raising three boys under the age of 5. Aza ran about. Taz began barking. The environment was completely new to the twins.
Jadon trembled and cried every time Taz barked. The night before, the parents had talked of how they longed to sit with the boys on the couch.
With Jadon screaming, Nicole took a seat on the living room couch and held him. "This is your home," she whispered. "Don't be scared."
His tears abated.
A few hours later, Anias fell asleep first. Jadon soon followed. Both boys were asleep in their home.
As much as Nicole and Christian dreamed of the moment, they said, it was even better than they imagined.