Nehemiah was born at 26 weeks with a hole in his heart and a grade 4 intraventricular hemorrhage, or brain bleed, that was causing seizures.
Born at just 26 weeks old and 1 lb. 12 oz., tiny Nehemiah let his mom know he was going to be okay.
“He came out crying so I knew he was going to be something special,” said Leslie, Nehemiah’s mom. “He had a hole in his heart, a serious brain bleed and seizures. The doctors told me he was going to need a lot of care so I did everything I was told to do – I pumped milk, lined up support services and completed First Aid training – so as soon as he was ready to come home, I would be ready, too.”
Nehemiah was diagnosed with cerebral palsy and spent 2-and-a-half months in the NICU. Once home, he had home care nurses monitoring his condition and physical therapists helping him gain strength. Several months in, he began having episodes of acute aspiration that would put his mom’s First Aid training skills to work.
Nehemiah’s determination and ongoing physical therapy has helped him achieve his goals – big and small.
Just before his first birthday, Nehemiah had eye surgery to improve his strabismus. He was also continuing with physical therapy so he’d be able to use his walker before starting preschool.
At 5, he had tendon-lengthening surgery on his left ankle and calf that placed him in a hip to toe cast for 6 weeks. Afterward, he had intense day rehab for 5 weeks to help with flexibility, balance and motor development.
As he worked to gain strength, his seizures were just as relentless. Nehemiah had a video EEG done to determine the best treatment to lessen the frequency and intensity of his seizures.
From eye surgeries to tendon lengthening and hip reconstruction, Nehemiah has undergone multiple procedures to help him gain the strength, mobility and control he needs to thrive.
“I don’t let Nehemiah’s disability define him,” said Leslie. “He may look bad on medical papers, but if you see him and talk with him you’d never know what he’s been though and how much he’s achieved.”
Two years ago, the spasticity in the muscles around Nehemiah’s hip were causing him pain and difficulty walking. Dr. Adamczyk performed 2 major surgeries on Nehemiah to create a hip socket, where there wasn’t one before, to relieve pressure and improve alignment for walking.
Nehemiah has become a very independent young man and loves going to school, helping others and attending physical and aquatic therapy.
The recovery was long and required 2 months in day rehab, but fortunately he had a friend waiting for him.
“Donna (his therapist) is able to get Nehemiah to do things he wouldn’t on his own,” said Leslie. “She knows he’s capable so she encourages him to get to his full potential. We absolutely love her.”
Nehemiah is a good student and very musical. He loves playing instruments, especially the drums.
Today, Nehemiah continues to work hard in therapy and in the classroom. Although he’s already accomplished so much, there is more he wants to do. After graduating from high school and college, he wants to walk with a cane, not a walker, get married and start his own family.
From an uncertain start, Nehemiah’s strength and determination has helped him grow into a very outgoing, talkative and active young man.
If your child has cerebral palsy or other physical disorders, learn how Akron Children’s spasticity clinic and physical therapy programs can help. To learn more about lowering the risk of premature birth, talk with your health care provider.
