As Nicole McDonald watched her 2-year-old son Jadon throw a ball across the living room, crawl after it and giggle uncontrollably, the young mom never imagined she'd have this special moment with her boy.
Jadon was born conjoined at the head with his twin Anias. For much of their lives, McDonald wondered if the boys would ever have an ordinary childhood.
“We lived every day in the hospital for such a long time that it felt like that was going to be our normal forever,” McDonald told TODAY. “Every day is our dream. It is wonderful.”
Less than a year after doctors at Children’s Hospital at Montefiore in New York separated the twins during a 27-hour surgery, Jadon and Anias returned home in the Bronx to live with their parents and older brother, Aza.
Twins born connected at the head, also known as craniopagus twins, are extremely rare — they account for only one out of every 2.5 million live births.
After completing rehab at Blythedale Children’s Hospital, Jadon and Anias still take part in 20 hours of in-home therapy a week. The October 14, 2016, surgery allowed the boys to live independent of each other, but it also meant they were restarting as if they were infants again.
Jadon was always the stronger of the two and his progress has been faster. He babbles endlessly, crawls, sits up and pulls himself up on the furniture as he tries taking wobbly steps.
“He is the most charismatic child I have ever met. He is always smiling,” McDonald said. “He runs the room and entertains himself.”
Anias experiences weakness and has limited function on his right side. He struggles to hold up his head, which is almost the size of his trunk. He also relies on a feeding tube.
“Anias is my little underdog,” McDonald said. “He has to fight so many more battles than Jadon and he always does it gracefully.”
Recently, Anias was playing with a toy xylophone and McDonald placed the mallet in his left hand. He switched it to his right and started playing with it. McDonald, who worked as a physical therapist, was stunned. It should be nearly impossible for him to use his right arm, yet he's trying.
“For me to see, that’s exceptional,” she said.
Life can be chaotic with therapy and special medical needs. But the family enjoys life under one roof. McDonald looks forward to small milestones, like taking all her sons to the grocery store without the help of her husband, Christian.
“I want Anias to sit up in a grocery cart,” she said. “I can’t tell you how excited I am for the little things.”
While life has been challenging over the past two years, their faith in God helped them through it.
“We would not have been able to do it if we didn’t have our faith,” McDonald said.
McDonald expects that by age 5, Jadon will be as active and capable as any other boy his age. Anias will need a bit longer to reach his brother's development, but she sees him working hard to improve. When they are 8, they’ll need to undergo skull reconstruction.
“This could set back things. We are not done in the process,” she said.
For now, they’re creating memories and making up for lost time. A few weeks ago, they went on their first vacation to Vermont. During dinner one night, Anias grabbed food from a McDonald’s meal and put it in his mouth.
“He swallowed his first couple bites of food and he cried. He was so surprised because he had never eaten before,” she said. “I couldn’t give him more because I was scared.”
But she takes it as an encouraging sign from her underdog.
“I just know Anias will be eating,” she said. “He is so adamant about doing everything.”