TALLAHASSEE, Fla. (AP) — Jayant Karnik sits in a high chair decorated with a red, blue, purple and green banner that reads "o-n-e." A chorus of family and friends dressed in Philadelphia-themed shirts sing "Happy Birthday."
The dark-haired baby sticks his fingers into a chocolate cake with yellow and brown frosting and shoves it into his mouth. In between bites, he looks up at his parents, Sunil and Emily Karnik with a twinkle in his eyes. They lean in to kiss him on each cheek. As he wipes brown frosting on his mother's face, she pulls away, surprised and laughs.
A magical moment.
For Emily and Sunil, every step is an accomplishment, every hurdle is a reason to celebrate.
"You have to stop and take in the beauty that's around you and realize that your journey's different but it's still just as wonderful," she said. "It may not be what you thought it was going to be but it could be better."
Emily and Sunil waited years for this. Their son is the culmination of a love that sprouted at Florida High. But even as they celebrate their son's first big milestone, their joy is tinged by the knowledge that their parental journey will be complicated and taxing and uncertain, every step of the way.
"We started dating right after our senior year, that summer," Sunil said.
It was 2004. Emily won a scholarship to attend Wells College in New York; Sunil stayed close to home - Florida State University.
Their long-distance relationship survived one school year. Sophomore year, they both transferred to the University of West Florida in Pensacola. The guy raised by a widowed Indian immigrant and the girl from Kentucky have been inseparable since.
In 2010, they were married. After Emily finished her master's degree, they wanted to start a family. What followed was five years of futility - too many visits to fertility specialists to count.
"We just decided maybe we wouldn't have kids," she said, "and then all of a sudden we found out in May of 2017 that I was pregnant. It was a complete shock."
Like most first time mothers, Emily recalls every phase of her pregnancy. At 13 weeks, the couple learned they were having a boy. On Aug. 8, 2017, at 18 weeks, Emily and Sunil visited Tallahassee Memorial Hospital for a routine ultrasound. It was supposed to be another happy occasion.
Emily's mother, Lori Sue Bolton, accompanied them to their appointment for the first time. She'd get to see her grandchild for the first time.
"That's when everything changed," Sunil said.
Their maternal-fetal medicine specialist Dr. William Dobak spotted an anomaly in the brain.
"His brain wasn't fully developing like it should," Emily said.
That prompted the physician to look farther down on the ultrasound. There he saw the opening in the fetus' spine. Their unborn son had a neural tube defect, myelomeningocele. It's the most serious and common form of the birth defect known as spina bifida.
"I'm a nurse practitioner and so when he said that I knew what that meant, but it didn't really register with me," Emily said.
Spina bifida is a birth defect that prevents the spinal column from forming properly. Part of the spinal cord and nerves are left exposed through an opening in the back. Every year, about 1,500 babies are born with spina bifida in the United States.
"In our minds, we were just kind of processing everything slowly," Sunil said. "We felt like we had climbed up this hill and then we just got beaten right back down."
"We were pretty devastated," Emily added.
Dr. Dobak offered the couple hope. They had options with which he was very familiar. Surgery was available in utero, even before their son was born. Hospitals around the country were doing amazing things for unborn babies.
"He immediately said Philadelphia," Sunil said.
The couple went home and researched spina bifida, in utero surgery, and the hospitals specializing in the operations. They even discovered a PBS documentary, "Twice Born," about the procedures being performed at Children's Hospital of Philadelphia.
"You think about the things that they're not going to be able to do and until we really did research and saw other kids living with spina bifida and what kind of quality of life they have you think of all the worst-case scenarios," Emily said.
She called Dr. Dobak the next day. She wanted a referral for Philadelphia.
But given the complexities of health insurance, they needed more than a doctor's referral. The couple applied for authorization for the surgery through their provider, Capital Health Plan.
"We were initially denied, and our insurance considered it to be experimental," Emily said. They needed documentation from the doctors, case studies and research papers supporting that the surgery wasn't experimental. That it was the best as far as outcomes if they met certain criteria, she said.
They provided proof other insurance companies covered the surgery. For support, they even reached out to state legislators for support.
They couldn't wait long for approval. Fetal surgery for myelomeningocele can't be performed later than 25 weeks into a pregnancy.
"The time is ticking because there is that window and you have to hit it if you want to do it," Sunil said.
They scheduled a consultation in Philadelphia for August 29, 2017, just 21 days after the diagnosis. They didn't have time to wait for approval from CHP.
"We had already booked our flight and we were going to just pay for it out of pocket if we had to," Emily said.
Just five days before they flew north, CHP approved the surgery.
As a result of the Karniks raising the issue with CHP, the company reviewed its policy and subsequently referred it to Florida Blue Cross and Blue Shield, suggesting that the healthcare giant adjust its policy as well, said John Hogan, president and CEO of CHP.
"These things are not considered investigational and experimental anymore," Hogan said.
When they arrived in Philadelphia for their initial consultation, Emily and Sunil spent two days at Children's Hospital talking with doctors and undergoing tests to determine if they were candidates for the surgery. Once they found out they were, they spoke with social workers about the logistics. Theirs was going to be a long stay in the City of Brotherly Love.
"You have to be willing to relocate to Philadelphia after the surgery and for the duration of your pregnancy and to deliver up there," Sunil said.
Upon returning to Tallahassee, they sold their house.
They packed up their belongings and drove to a suburb of Philadelphia called Media, where they would live in the home of strangers who would become like family as part of a program called Hosts for Hospitals.
Surgery was scheduled for two days after their arrival.
Fetal surgery requires opening the mother's uterus to expose the baby, closing the opening in the baby's back and then reclosing the uterus. As complicated as it sounds, the procedure doesn't take long.
"The total surgery time was less than an hour," Sunil said.
They were the 371st case of utero spina bifida surgery at CHOP.
After four days in the hospital, Emily, who normally works full time as a nurse practitioner, was now confined to an upstairs bedroom and bathroom of the home. She was only allowed to go downstairs once a week for ultrasounds.
Eventually, she was allowed to move around more but was required to use a wheelchair until 33 weeks.
"Every single week you go in you're just nervous," she said. "It wasn't like your typical pregnancy."
Sunil's mother and brother had scheduled flights to arrive in time for Emily's C section, scheduled for Monday, Dec. 18, 2017. Emily's mother and stepfather were driving up from Florida.
But babies tend to stick to their own schedules.
Five days before delivery surgery, Emily felt achy. She phoned her mom who told her to call the doctor. The baby couldn't be ready, she told herself. Instead of calling the doctor, Emily went out for lunch and called the midwife afterward. She told her to come into the hospital.
"They hooked me up to a monitor and I was just having the mildest contractions, but they said nope we're going to go ahead and deliver you," Emily said.
Around 6 p.m. that evening, Jayant was born - 6 pounds 8 ounces, 18.5 inches tall.
He spent three days in the Neonatal Intensive Care Unit before the Karniks packed up and drove home. When they reached Tallahassee, it was Christmas Eve.
A year later, Emily and Sunil sit in their living room, reflecting on the time that has passed.
Life is busy now. Jayant needs physical therapy twice a week, but Emily and Sunil both work full time.
They rely heavily on their relatives for support. Emily's sister and mom pick him up from daycare, drive him to physical therapy and return him to daycare afterward.
An occupational therapist visits him while he's at daycare.
Because they sold their house, they've been living with Sunil's mom in the house where he grew up.
Nights are spent surrounded by family members including Emily and Sunil's siblings who live nearby. Their support boosts Emily and Sunil, but there's no denying the emotions when they go to the daycare to pick up their son at the end of each day.
Other children his age started crawling a few months before Jayant did at 11 months. It's common for toddlers with spina bifida to lag a little behind during the first two years. Jayant can pull himself up and stand with help, which is a good sign.
"He's really actually on track for his age," Dr. Jayati C. Singh, Jayant's pediatrician said. "He may be a month behind, but he's been doing really well."
Singh has four or five other patients born with spina bifida. Research shows all spina bifida kids have normal intelligence, but almost all experience some level of learning disabilities.
"They need a little additional help in school whether it's reading or actually processing what you're reading," she said. "But when you actually do an IQ (test,) intelligence wise they're fine."
But the physical challenges will persist and his parents will continue to learn to deal with them.
The surgery did not cure Jayant's spina bifida but no one can say for certain yet how the disease will affect him until he starts to grow and develop.
"It is hard sometimes still to see him struggle and to know that he's going to face obstacles and he's going to face things that are harder for him and there may be things that he can't do and you know it still makes me sad because he's the happiest baby," Emily said. "He's the sweetest little boy and I don't ever want him to hurt or be in any pain or be made fun of."
On Dec. 11, 2018, the Karniks flew to Philadelphia.
It was time for Jayant's one year check up with his neurosurgeon Gregory Heuer. It took CHP months to approve the appointment.
"We had such a weird sense of calm and feeling like we were 'home' when we got here yesterday," Emily said by telephone from Philadelphia.
Jayant was doing well under the circumstances.
"Dr. Heuer said that he is doing as best as we could expect," she said. "They were really pleased with his brain development and most recent MRIs."
This Christmas eve family will be at home. On Christmas morning, Santa will bring Jayant presents that'll help his development and movement: A push walker, foam blocks to crawl on.
Sunil and Emily won't be fussing about their presents under the tree.
They're just happy that Jayant is here and healthy.
Information from: Tallahassee (Fla.) Democrat, http://www.tdo.com