First time parents Stephanie and Mike were excited for Nathaniel’s arrival. A normal pregnancy brought hope for a healthy baby. No one prepared for the events of Nathaniel’s birth.
Stephanie was one week overdue when she went into labor. As the doctor broke her water, he discovered an abnormal amount of meconium and Nathaniel’s heart rate dropped rapidly, resulting in an emergency cesarean section. As the doctor brought baby Nathaniel into the world he was not breathing.
Efforts by the delivery room staff helped Stephanie and Mike hear what they had anxiously awaited – Nathaniel’s first breath.
Stephanie took Nathaniel back to the birth care room where within minutes he had a seizure and was rushed to the NICU. Later that night Nathaniel suffered 5 grand mal seizures. He was diagnosed as having lack of oxygen at birth.
One week after delivery Stephanie and Mike took Nathaniel home for the first time. The doctor explained that Nathaniel could have slight brain damage, if any at all, because of his traumatic birth.
Within four months Stephanie and Mike noticed that Nathaniel was not hitting milestones and his head circumference was not developing along with the rest of his body. He was still taking medication for his seizures.
“I am the oldest of four children and have many nieces and nephews. I knew there was something wrong,” said Stephanie.
A neighbor told Stephanie about an open house at the Growing Place at Heartspring and suggested that she check it out. “At that point all we knew was that he had seizures and he wasn’t developing normally,” said Stephanie. Nathaniel was four months old when he started physical therapy with Denise Begnoche at Heartspring.
At five months, Nathaniel had an MRI. The results confirmed his parents’ fears. He suffered much more than slight brain damage. Nathaniel had global brain damage. He was also then diagnosed with seizure disorder and cerebral palsy.
“Having a child like Nathaniel is very hard. You have an idea of what it is going to be like having a baby, but nothing prepares you for a child with disabilities,” said Stephanie. “At first there were no rewards with Nathaniel. It was all work. Later there were rewards – a smile or a laugh. You don’t take that for granted. You realize what a miracle it is.”
When Nathaniel was 6 months old he started occupational therapy at Heartspring along with his physical therapy.
“Nathaniel had a difficult time adjusting to therapy, crying often. But soon he learned to trust his therapist and over time, enjoy his therapy,” Begnoche said.
Nathaniel, now almost four years old, cannot walk or talk, not will he ever. His cerebral palsy causes his muscles to tighten, so much of his physical therapy consists o stretching high tone muscles to help prevent them from eventually deforming his young bones.
Although Nathaniel cannot communicate verbally, occupational therapist Elise Malmberg and speech therapist Diane Gough are helping Nathaniel communicate using new techniques.
“Eye gaze is the best system we have found so far,” said Gough. “Along with his severe motor deficits, his visual system is compromised, but recently he has begun to be very reliable when asked to look at someone if he wants them to continue a pleasurable activity.”
Nathaniel has also been working on accessing a switch to help him communicate. “In the beginning we used the switch to make battery operated toys walk or talk or make music, and the ultimate goal would be for him to use a voice output device to communicate activated by a switch. These devices range anywhere from a simple recorded voice device all the way up to a talking computer,” said Gough.
Along with stretching Nathaniel’s muscles, physical therapist Begnoche also help him simulate walking using a partial weight bearing system over a treadmill. Begnoche manually stimulates Nathaniel’s legs through a stepping pattern. By using a stander at home to provide weight-bearing assistance in an upright position, Nathaniel gains joint integrity, while giving himself a different view of the world.
Heartspring therapists have provided much more than just therapy for Nathaniel and his family. “I wanted to cry so often. I felt like I wasn’t doing enough for him,” said Stephanie. “I felt inadequate to take care of him with all of his problems. The therapists were so encouraging and supportive. They spend a lot of time researching for Nathaniel.”
A smile spread across Stephanie’s face as she recalled a time when Begnoche leaned over and kissed Nathaniel on his cheek. “I guess it’s natural to love him like that.”
Raising a child with disabilities has changed the lives of his parents. “I believe God is good,” said Stephanie. “It (having Nathaniel) brought my husband and I closer. Having him presented many problems, but ones that we had to face together. It made us patient people. We are better people and better parents because of Nathaniel.”
Stephanie brings Nathaniel to Heartspring for three therapies a week. Without the financial assistance fund at Heartspring, she and Mike could not make ends meet with his teacher salary their only source of income.
“I told Heartspring I could only pay half of our bill. They said ‘no problem’. We are fortunate to have good insurance. I know there are families who don’t have insurance and financial assistance is the only way they could get services here,” said Stephanie.
Heartspring believes that no child should be deprived from therapy due to an inability to pay. The Heartspring financial assistance program guarantees that all children get the help they need and deserve.
Nathaniel continues to warm the hearts of those who meet him. His brown eyes dance when he hears the voice of his therapist.
“While he as presented numerous challenges in his daily care and positioning, his mother has been a calm and resilient advocate for her child, lovingly caring for his needs, even when she herself is deprived of sleep,” Begnoche said. “He is also loved by his father and baby sister Mia. Nathaniel is a blessing to all the therapists and Heartspring who work with him.”