Nikos K Spina Bifida Nikos Story

They’re willing to do anything they can to help these kids and the progress Nikos has made is just incredible.

Nicole and AJ Kaymakcian were excited to welcome their second child in the fall of 2018. Everything about the pregnancy was going well, until they arrived for their 20-week ultrasound and received an unexpected update.

“We’re at the hospital for our 20-week scan, and we were so happy receiving great updates,” shares Nicole. “The baby’s heart looked great, brain looked great, and we learned that we were expecting our second son. There was so much joy. But when we met with the doctor, I remember him saying that this wasn’t a good situation.”

That’s when Nicole and her husband learned their baby had spina bifida, a neural tube defect where the spinal cord fails to develop or close properly. “The doctor explained to us scientifically what this diagnosis was and what to expect, saying that our son would never walk or use the bathroom on his own, and that he would need a shunt to drain fluid from his brain,” shares Nicole. “I remember crying thinking my son was going to have no quality of life, asking this doctor to tell me there is a chance, even just a 1% chance, that my son would be able to do these things, and he said no.”

At that point, Nicole and AJ went home and shared the news with their family and friends while discussing the option of performing in utero surgery to try and close the hole in their baby’s spine. One day, a friend from church called Nicole and shared that her now 18-year-old daughter had a similar diagnosis and recommended she reach out to her neurosurgeon for another opinion. “I immediately called and set up an appointment. When I met with this doctor he examined me and the baby and told me, go home and enjoy your pregnancy. When your son is born we will do surgery and take it from there. And that’s what I did.”

NikosWelcome to the World

The rest of Nicole’s pregnancy went smoothly and she experienced no other complications. On October 29, 2018, Nicole gave birth to Nikos Kaymakcian at Monmouth Medical Center, an RWJBarnabas Health facility. The neurosurgeon she had met with was able to perform Nikos’ surgery the day after his birth and everything went perfectly, but Nikos continued seeing the surgeon weekly to monitor for hydrocephalus, a buildup of fluid on the brain which is usually treated with a shunt.

“It was obvious that fluid was building up on his brain, so we decided with our doctor to take the next step and schedule surgery,” shares Nicole. “I anticipated this day and knew that it was almost a sure-thing that Nikos would need intervention. When we arrived the day of the surgery, my husband and I had been praying for everything to go smoothly. We even asked the doctor to take another set of measurements on Nikos, noticing the swelling had gone down. We thought, maybe we’re seeing things, but miraculously, the swelling had gone down and the doctor cancelled Nikos’s surgery minutes before it was about to take place. This is something that happens in only 10% of spina bifada cases and we truly believe it was our night of prayer and our faith that kept Nikos from ever needing to go through with surgery and never needing a shunt. ”

As Nikos grew, he continued seeing his doctors for check-ups and evaluations, and he began early intervention before his first birthday. That’s when Nikos was first introduced to Children’s Specialized Hospital (CSH).

NikosA Care Team on His Side

Nikos came for a physical therapy evaluation in 2019, and began sessions with physical therapist Tara Iannello at the Toms River Lakehurst Road Outpatient Center.

“Tara is literally an angel,” says Nicole. “She is the perfect mix of knowledge, firmness and kindness. I have a video of Nikos holding her face like he’s in love with her. He knows she’s on his side.”

“It has been an absolute pleasure and honor to be part of Nikos’ and his family’s journey here at CSH,” shares Tara Iannello. “He is such a sweet and funny kid and is always ready to work so hard. He comes to each session with a smile on his face and just so excited to play in the gym. He has gotten so strong and is really starting to understand what we are working on during the therapy sessions together.”

“He loves therapy,” says Nicole. “I was sick recently and we couldn’t make an appointment and he cried because he wanted to go see Ms. Tara and play in the gym. The team is so incredible there. If a child likes something, they will incorporate that into a therapy session to keep them engaged. Last year Nikos loved superheroes, so Tara took an action figure of every superhero she could find and set them up in stations so he had to practice walking to each one.”

NikosNikos is also being treated by Physical Therapist, Natalie Vulpis, who stepped in to work with Nikos when Tara took a leave last year. “I never doubted that Nikos was being provided the absolute best care with Natalie,” explains Tara. “I think that’s part of why I love CSH so much; the ability to work alongside therapists who bring to the table their own talents. Every family will experience the best that the therapists can offer. You won’t find care like that anywhere else.”

“Natalie has been a great fit for Nikos,” Nicole adds. “Nikos is a strong-willed boy and he needs people to be tough on him when he doesn’t want to do something. Natalie has no problem doing that and helps him push through.”

“I feel so lucky that I get to work with Nikos and his family,” adds Tara. “His family is so supportive and I am so grateful for family-centered care at CSH. His family really listens to Natalie and I, and we both know that they are working so hard with him at home so that he can continue to get stronger. We both have no doubt that Nikos will do great things in this world.”

Nikos and TherapistsKeeping the Faith

Outside of therapy, Nikos currently loves pirates, the TV show Peppa Pig, and the movie Encanto. He also loves to do karate with his older brother, Arman. “Nikos loves working with the karate instructor that his older brother sees, and it’s been incredible to watch him strengthen those skills,” shares Nicole.

Nikos does have some weakness in his ankles and feet due to nerve damage from spina bifida, but he is on par with all other milestones for his age. “One of the biggest obstacles that he’s overcome is walking. I think back to my 20-week ultrasound when the doctor told me my son would never walk and he is,” shares Nicole. “He used to use a light gait to assist, and now he’s walking with braces and his walker, taking steps on his own. My greatest hope is that he will continue to get stronger and be able to walk more independently, but Tara and Natalie and the entire team at CSH have been so amazing. They’re willing to do anything they can to help these kids and the progress Nikos has made is just incredible.”

“Everything Nikos has gone through is a miracle,” states Nicole. “The team at CSH do their jobs with such heart and they love these kids. They love Nikos so much and it makes a difference. I can’t say enough good things about what they have done for my son. We’re so blessed. We love them with all our heart.”

Ultimately Nicole shares that she wants to get the word out to other parents to not give up hope, that no matter what you will find what works for your family and things will be ok.

“I just want to be able to help other parents and help them help their child. The only way to do that is getting the word out there about how good Children’s Specialized Hospital has been to us. I owe them everything.”