NEW YORK — It’s going to be a long and hard road to recovery for two twins who were once joined at their heads but are now separated. However, doctors are pleased and fascinated with the progress they’ve made.
Jadon and Anias are literally one in 2.5 million. They were born craniopagus twins, conjoined at the head, sharing between one-and-a-half to two inches of brain tissue. After more than a year of planning, last month the boys were separated after a 27-hour long surgery at Children’s Hospital at Montefiore, in New York’s Bronx.
For the McDonalds, the entire month has been full of first times.
First time in separate beds. First time being held. First time seeing each other.
The boys have battle infections, fevers and seizures. It has been particularly trying for Anias.
Despite all of that, the boys doctors are pleased with their progress.
“One month out, this to me is incredibly fast,” said Dr. James Goodrich, neurosurgeon.
Their mother and father remain nervous but hopeful.
“I think about their future all the time. All the time. I think about the first time they go to a park. I think about them getting married someday. I think about … I’ve thought through their whole future, a hundred times over, yeah,” said Nicole McDonald, their mother.
“It’s not that I’m not optimistic. I don’t know. I’m just more curious about what the future holds for them. But I guess I don’t want to get my hopes up. I guess I just take it one day at a time,” said Christian McDonald, their father.
Parents receive encouragement from strangers’ letters
The package was delivered to the 10th-floor hospital room and addressed to Jadon and Anias McDonald, the twins born conjoined at the head whose separation surgery has inspired millions around the world.
The return address was the Otisville Correctional Facility in upstate New York. Inside were hand-drawn pictures, homemade poems and an assortment of get-well notes and prayers for the boys.
“It’s the best gift I’ve ever gotten,” says the twins’ mom, Nicole McDonald.
Nicole and her husband, Christian, wish the rest of the country could experience what they’ve seen and felt over the past month.
Generosity and gratitude. They’re what Thanksgiving Day is all about, but they sometimes seem in short supply after an election that frayed nerves and divided families. And each news cycle brings another array of headlines that test people’s resolve.
Nicole and Christian have seen a much different America, one filled with kind, loving and selfless people. From hugs and stuffed animals to donations and messages of support, the parents have been left in awe. Donations to their GoFundMe page to cover the boys’ medical expenses have skyrocketed from about $50,000 before the surgery to nearly $300,000.
The parents don’t quite understand the outpouring. They wonder: Why us? Why our boys?
But a nice note from a single stranger can turn an excruciating day — one filled with tears — into a more optimistic one. The messages come almost daily via Facebook or in the mail. Most carry similar themes: I think about your boys and pray for them every day.
“When you’re just about running out of gas, it’s the constant fuel that not only feels good because people care so much, it rejuvenates me in a way that I can’t explain,” Nicole says.
Christian says he appreciates people’s prayers more than anything. “I know God hears prayers,” he says. “I think our prayers did influence God to help out.”
And that is their message this Thanksgiving: Use the positivity shown to their boys and roll that energy into doing something good for others. In their case, the parents have asked that donations be made to a friend whose child is in need of a kidney transplant.
So much has been given to their family, they want to pay it forward.
“Instead of seeing the ugly hearts of people, I get to see the best hearts of people all the time,” Nicole says. “And it shows me continually that most people are good. We get this perception that most people aren’t, but what I’m seeing is so amazing to me.”
In no way has their journey been easy. Nicole, 31, and Christian, 37, moved with the twins and their 3-year-old son, Aza, from their Illinois town of 5,000 to the Bronx to be near the Children’s Hospital at Montefiore Medical Center.
They quit their jobs and gave all their attention to their children. Seemingly every second of every day has been spent thinking about the twins, first before the surgery and then after.
“When we do something, we’re going to do it fully and with our whole heart and to the best of our ability,” Nicole says. “And if that means sacrificing self for as long as we need to give our children the chance they need to thrive in life, then it’s the best thing I’ve ever given up myself for.”
Adds Christian, “We’ve really served our boys a lot and basically put our lives on hold for our boys and put them first.”
There have been many firsts since the 27-hour surgery ended on October 14: the first time the twins slept in separate beds. The first time they saw each other face to face. The first time they were held.
Holding each child separately was surreal and beautiful for Nicole. Jadon was the first one she held. “He just got quiet, and I just rocked him, and it was great. Great isn’t even the right word. I don’t know a word,” she says.
Anias was different. He was crying and fussy one night about 6 p.m. when she first held him, putting him on her shoulder. When that did little to calm him, she moved him into the crook of her arm.
“He stopped crying instantly, and he looked up with me with those two huge brown eyes and just watched my face. I rocked him back and forth. I could feel his whole body just loosen.”
When they were conjoined, the twins were confined to a single bed. When one child needed to be consoled, Nicole found it hard to give him her full attention. Her eyes would shift back and forth, and she could never focus on one baby.
She thought of that as Anias — who has struggled more than Jadon since the surgery — fell asleep in her arms. “I was singing to him, and I was able to just focus on his face, and his eyes would flutter, close and then pop open to make sure I was still there.
“He was just as amazed with me as I was with him.”
Yet between the moments of firsts have been moments of anguish. The boys have battled infections, fevers and seizures.
Infections near Anias’ brain forced doctors to remove the skull cap they had fashioned out of the boys’ conjoined skull. His scalp is now the only thing covering the top of his head. He will eventually undergo more surgery to have a new skull cap inserted, but that is years down the road. Until then, he will wear a protective helmet.
The parents try to focus on the positive. Both boys are progressing faster than any other craniopagus twins who’ve undergone surgery. Both are beginning to show signs of their old selves: Jadon, the rambunctious one, and Anias, the contemplative one.
Mom spends almost all her time in their room. Dad tends to 3-year-old Aza, does the laundry, fetches groceries and makes sure the bills get paid.
As if worrying about the twins wasn’t enough, Aza recently got hand, foot and mouth disease. That forced his parents to be away from the twins for five days to make sure Jadon and Anias didn’t get sick.
Nicole, Christian and Aza went to Boston, to visit a city they had never been to before. Nicole is actually thankful Aza got sick: “It gave me time with him for a change.”
On Thursday, at the family’s temporary Bronx home, Nicole will prepare a donated turkey and other traditional Thanksgiving favorites. Her grandparents will join them for the feast.
They won’t dwell on their worries. They’ll emphasize their gratitude.
“When you’re in huge rough patches of life, you can either focus on the tough, or you can find the things to be grateful for,” Nicole says. “And in doing so, we’re able to get through it in a positive way.”
Their wish this day is that America will do the same.