In giving some background about her family, Amanda Moffatt states very matter-of-factly that “her oven is broken.” All three of her children—Gavin (age 8), Gabriel (age 4) and Leo (age 2) were born prematurely, none weighing more than 4 pounds at birth. “My nephew weighed more on the day he was born than Gavin weighed at four months old,” Moffatt says. “When I look at a full-term baby, I can’t help but think ‘Wow, they are huge!’” In addition to weighing in at only 3 pounds, 11 ounces at birth, Gavin is unique for another reason—he is one of the estimated 764,000 individuals in the U.S. affected by cerebral palsy (CP).
Getting to Know Cerebral Palsy
to United Cerebral Palsy, CP is characterized by an individual’s inability to fully control motor function, particularly muscle control and coordination. CP is not caused by problems in the muscles or nerves—rather, it is caused by damage to the motor areas of the brain that disrupt the brain’s ability to adequately control movement and posture.
In the US, an estimated 70 percent of cases of CP happen before birth, when the unborn child suffers a brain injury, infection or abnormal development of brain tissue. Another 20 percent of CP cases are caused by a brain injury that occurs during the birthing process. About 10 percent of children with CP acquire it through brain damage in the first few months or years of life through brain infections, head injuries, abuse or accidents. Approximately 8,000 babies and infants, and 1,200-1,500 preschool age children, are diagnosed with cerebral palsy each year. It is estimated that two out of every 1,000 newborn children will develop cerebral palsy, and approximately 40 percent of those born with CP will have a severe case.
CP is the most common motor disorder and is second only to autism as the most common disability in children. Individuals with CP exhibit muscle tightness or spasticity, involuntary movements, disturbances in gait or mobility, problems with speech and learning disabilities. CP is not a disease, and is neither progressive nor communicable.
An Unexpected Arrival
Moffatt’s pregnancy with Gavin in 2001 was completely normal. “We did not know before Gavin was born that he had cerebral palsy,” she explains. “Five weeks before my due date, I realized that I did not feel him move very much one day and I had some pain in my upper stomach and thought perhaps it was contractions.”
At the urging of her sister-in-law who was a nurse, Moffatt went to her obstetrician for an ultrasound. She ended up at Southwest Medical Center, where doctors realized that the baby was in distress. Further complicating matters was the fact that Amanda was preeclamptic and her blood pressure was high. Her labor was induced, but after doctors conducted a biophysical profile on the baby and realized her amniotic fluid was low, she underwent an emergency c-section. “I remember laying on a table and listening to the doctor and operating room staff place good natured guesses on the size and weight of the baby,” Amanda recalls. “When he was born, the first thing the doctor said was ‘He’s not as big as I thought.’”
Since Southwest Medical Center did not have a NICU, Gavin was immediately medi-flighted to Baptist Medical Center. While still hospitalized for the after-effects of the preeclampsia, Amanda was granted a temporary medical release to go visit her baby. “That was an unusual practice for a hospital,” Amanda said. “Now, I know that they weren’t sure Gavin was going to make it and wanted to make sure I got to see him.”
After being in the NICU for 15 days, the Moffatts took Gavin home on January 1, 2002. “We were sent home with a diagnosis of ‘failure to thrive’ because he was not gaining weight,” Amanda said. “It was the opinion of his doctors that things would get better once we got home and settled—and they did.”
The Low End of Normal
It was her sister-in-law that started noticing certain things about Gavin’s behavior, mostly that he was not reaching typical guidelines for infant development. At 10 months, Gavin wasn’t sitting up or crawling. “He had no trunk control. He could lift his head and roll over, but he was not pulling up or doing anything like that,” Amanda explained. Concerned, the Moffatts began seeking referrals for a special needs doctor. Their new pediatrician sent them to a pediatric neurologist, who conducted an MRI and showed them a photo of Gavin’s brain.
Due to the low amniotic fluid, the neurologist explained that Gavin had laid on his umbilical cord and was temporarily deprived of oxygen, resulting in brain damage on the left side of his brain. The Moffatts asked what to expect and were told that Gavin would be on the “low end of normal intelligence” and limited use of his right hand.
By the time he was two years old, Gavin was working with a physical therapist, an occupational therapist and a speech pathologist for his spastic CP. His doctors were pleased with his progress. “It was just doctor after doctor—we went to a different doctor for everything,” Amanda recalled. As Gavin graduated from the SoonerStart program, his doctors encouraged the family to send him to public school. “When the day came for him to go to Pre-K, I cried and he didn’t,” Amanda said. “And then I cried because he didn’t cry!”
Gavin did well in school and loved being around other kids. Amanda went into what she describes as “resource mode,” investigating what the family could get and do to make life easier for Gavin.
Getting to Know Gavin
“Gavin is very sensitive and very in tune to what’s going on around him,” Amanda says of her oldest child. “He loves to play Transformers with his brothers and play with Nerf guns with his cousins. He is very ornery, just like any other kid his age.” Gavin loves to read, listen to music and watch Nickelodeon, particularly the show iCarly. The front wheels of his wheelchair light up, similar to many of his classmates’ tennis shoes. “He has a memory like nothing you’d believe. He can watch a movie and remember every aspect,” she says. “It’s weird how some of the synapses in his brain don’t work right, but then others super-fire.”
“Gavin thinks he can do it all,” Amanda explained. “For a long time, he was truly not aware that he was different than other kids.” Amanda said her family is often asked about getting a motorized wheelchair for Gavin and she chuckles “At this age, he just isn’t ready for that kind of power!”
As his brothers have gotten older, they have come to realize that Gavin can’t get up and chase them if they take something of his, but he can certainly wrestle with them if they get close enough. “The joke in our house is that you can take something from Gavin, but you’d better not let him catch you,” Amanda explained. “My other kids just play around with him—it’s just a normal part of their world.”
The Importance of Independence
The ultimate truth for Moffatt is that life with Gavin is exactly what they make it. “He is just as handicapped as we treat him. He can do things himself and we don’t enable him (to do things we know he is capable of doing on his own). That’s what allows him to be in a regular classroom in school and stimulates him to be able to have a regular conversation.”
At this time, there is no cure for CP. Training and therapy, however, can improve muscle function and coordination and studies have found that children who receive early intervention services are more likely to lead a typical life. Treatment options for individuals affected by CP include therapy, medications, surgery, education and support. In medical circles, there is hope that advances in neuroplasticity, neural regeneration and neuroprotection may lead to a cure in the future.
The Moffatts are currently considering taking Gavin to the Shriners Hospital for Children in Shreveport, Louisiana for a surgical procedure designed to loosen his muscles. “Loosening him up would allow him to use his muscles more effectively and give him more independence,” Amanda predicted. The surgery and recovery would likely take 10-14 days, so the family is also exploring local options to help ease the logistics of being out of town for such a lengthy—and painful—procedure. “We are looking for a local surgeon with similar qualifications,” Amanda says. “It would be nice for him to be close to his support system. He’s a tough kid. I know he’ll do fine.”
While Gavin probably won’t be able to fully walk, the family hopes that the surgery will enable him to take a few steps between his wheelchair and the car. “His life will always be tied to the chair,” Amanda explains. “But the surgery will give him more mobility, flexibility and independence. Our goal for him is to be more independent, especially in school. Our doctors agree that it is a realistic goal for him.”
Words of Wisdom from a CP Mom
“As parents, we can stifle kids and make it so that they feel uncomfortable around any type of disability,” Moffatt says. “It’s only natural to be curious about wheelchairs, walkers and people who walk or talk differently. It’s just human nature.”
She advises that, if you know your kids are going to encounter a special needs kid in school or in their daily routine, that you take the time to talk about it, read a book or watch a TV show about the particular disability and, most importantly, encourage them to not be scared to talk to the other child and simply say hello. “If you just happen to cross paths with a disabled kid, allow your kid to go over and approach the other child positively,” Moffatt explains. “Kids don’t have trouble adapting. They just take it all in stride. Allow them to learn.”
When asked about words of wisdom for other families who have a special needs child or may be expecting one, Moffatt’s positive spirit shows through. Disabilities, she says, really help put life into perspective. She says it helps her not to take things too seriously and not to focus on the unimportant things in life. “We are fortunate that Gavin has adapted as well as he has,” she reflects. “Just appreciate those you love and thank God for what you have.”
She says that, while you can’t expect the world to adapt for you, there are numerous avenues to learn about available resources and parenting groups to help make the journey easier. She admits that a temptation might exist to feel sorry for yourself or your child, but Amanda’s call to action is to “get motivated and make your child’s life different.”
In musing about her journey with CP, she says it helps to remind herself that some mothers only get to have their babies for a few hours and sometimes not at all. “It may not be the life we originally thought, but he still has a life. Your child’s life is what you make it. Get in there and make the best of it.”
Types of Cerebral Palsy:
Spastic: characterized by muscle stiffness and permanent contractions
Athetoid or Dyskinetic: characterized by uncontrolled, slow, writhing movements
Ataxic: characterized by poor coordination and balance
Resources for Families:
SoonerStart Oklahoma City: 405-271-9477 Norman: 405-321-4048
Early Childhood Intervention for children birth to age 3 with developmental delays. Developmental assessment.
My Child Without Limits: mychildwithoutlimits.org
Online community, resources and information about CP for parents, families, professionals and caregivers of children ages zero to five, newly diagnosed with a disability or developmental delay.
Madalyn McCollom, the Director of the Oklahoma Areawide Services Information System (OASIS) program at the OU Health Sciences Center said, “If someone calls our office with a newborn or a child recently diagnosed with a disability, we can help them locate sources for assistance, support groups, or national organizations with helpful information. We can put parents in touch with great advocacy organizations that can help them be an advocate for their child.”
OASIS Information & Referral Oklahoma City –
Statewide 405-271-6302 or 800-426-2747, oasis.ouhsc.edu
For families of children and adults with disabilities and special health care needs. Statewide resource database, including disability-related support groups. OASIS Parent Contact System offers Parent-to-Parent networking, linking parents of children with similar conditions
Brooke Barnett is the Assistant Editor of MetroFamily Magazine.