A Life Full of Miracles: One Family's Journey with Spina Bifida
The minute you meet 11-year-old Prince-Miles Randolph, you notice his soulful eyes and warm smile. And if you watch him play basketball or perform with his school band, it may take you a while to even notice his disability.
His mother, Terra Long, had an uneventful pregnancy, until an ultrasound at 24 weeks revealed that her baby's head circumference and belly circumference didn't match - a strong indicator of spina bifida, a birth defect that occurs when the neural tube fails to fuse together to protect the spinal cord.
"We were referred to the high risk clinic for a more aggressive ultrasound," she recalls. "It wasn't clear at the time how high his levels were, but it was clear that he had spina bifida. The option was presented to schedule an abortion immediately, but that wasn't an option in my book."
Terra readily admits that her initial reaction was despair. "I went into denial," she says. "But I had to realize that [spina bifida] was our reality. I decided I was going to live with this and not let it live for me."
Terra began researching schools and daycares that could offer the therapy her son would need. She visited the spina bifida clinic at Arkansas Children's Hospital when she was seven months pregnant, where she met other parents and children with spina bifida.
She also spent a good deal of time praying, a practice that she says continues to get her through the hard days. "I asked Him, 'Lord, why am I having a child like this?' It bothered me for a few days. My comfort was, the Lord came to me and said, 'It takes a special person to take care of special children.' And out of that I got Prince-Miles."
Prince-Miles was delivered by C-section at St. Vincent's Doctor's Hospital and immediately airlifted to Arkansas Children's Hospital, where he stayed in the NICU for 29 days.
"We knew that Prince-Miles was going to have spina bifida," says Terra, "but there were so many other things that were wrong, too. He had a hole in both chambers of his heart. The blood was flowing too fast through the main artery that joins the two chambers of his heart, so he had to have a band put on to slow the blood flow. His fontanels were extremely large. He had a cleft palate. It was overwhelming. I had him on a Thursday and didn't even get a chance to see him until Sunday."
The family was finally able to take Prince-Miles home, but the homecoming was short lived. He was back in the hospital three days later, and there he stayed for another 32 days.
"I've never been the type of person that lets the weight of the world overwhelm me," explains Terra. "But it got to be where [the doctors] would say, 'Oh, you'll be able to go home on Friday.' But then Friday would come and then it'd be like 'Maybe you can go home on Tuesday.' That emotional roller coaster does take a toll on you. It requires you to stay prayed up."
Overcoming Hurdles
When he was 3 months old, Prince-Miles began attending Butterfly Learning Center, which is part of United Cerebral Palsy of Central Arkansas. He received physical, occupational and speech therapy there until he was 4 years old. "They were wonderful there," notes Terra. "With him having a cleft palate, [speech therapy] made a huge difference in him learning to drink from a bottle and eventually to start talking. His enunciation is much better than even typical children, and I think the speech therapy is the reason."
All told, Prince-Miles has had 26 surgeries since he was born. In May 2010, he underwent the longest surgery of his life, enduring a 19-hour procedure to augment his bladder. "It makes him more independent," explains Terra. "He can do a lot more on his own to take care of his bladder needs. He doesn't have to depend on someone else to help him."
This surgery was the final planned surgery, and while emergency or other small outpatient procedures may come along, Terra and Prince-Miles are both enjoying the break.
"Hopefully the big hurdles are behind us," she says.
For Terra, her son's progress is nothing short of a miracle. "I was told when I was pregnant, when they gave us the option of abortion, that he would probably never move anything from the waist down, he would never have language skills, he wouldn't have math skills," she explains. "And he does struggle a bit in school, but he's reading, he's adding and subtracting, and most importantly he's walking."
Prince-Miles has a wheelchair he uses for distance, but for the most part, he walks everywhere he goes with the support of braces. "Steve at Snell has been working with Prince-Miles since he was 6 months old," notes Terra. "It's like having another member of the family. They have their own little bond."
An active sixth-grader at East End Intermediate, Prince-Miles plays baseball with Miracle League and Upward Basketball. He takes music lessons, vocal lessons and performs with his school band. In short, there's nothing he won't try.
"I've never told him there's something he can't do," says his mother. "I let him try it. And if he figures out it's not something he wants to do or it won't work for him, then we don't do it. But if it's something that's challenging for him and I think he can do it, I'll encourage him to keep at it.
"A lot of people use the word normal," she continues. "We've adapted to normal. What's normal for somebody isn't what's normal for us. Prince-Miles does what's normal for Prince-Miles. I tell him, '
You are not handicapped.' I don't care for that word. He has a disability, and we cater to his disability."
Every summer, Prince-Miles goes to spina bifida camp at Camp Aldersgate, where he spends a week with other children who "function like him. So he knows he's not the only one, and he's not in this by himself," says Terra. And while his questions about life are very mature for an 11-year-old, he never expresses anger or resentment for being born with a disability.
"Prince-Miles is a joy, and he gives me strength," says Terra. "I remember when he was in kindergarten. I got a phone call that he'd have surgery within 24 hours. I just immediately started crying. He came and put his hand on my knee and said, 'Mom, you said that God said "By His stripes, you are healed," So why are you crying?'"
"From that day on," she continues, "my tears have been tears of joy. No matter how hard it seems at this moment, I'm rejoicing for what's coming. With the rain, the sunshine is coming."