Rosa Ramirez thought her four-month pregnancy checkup would go as smoothly as her previous appointments. Full of excitement for the baby growing inside her, Rosa was given the grim news...her baby was curled into a tiny ball, not moving. His abdomen was fluid filled causing it to be bigger than his head. His spine, instead of being straight, was more like a squiggly line. Doctors said the baby would not survive past Rosa's six month of pregnancy.
Fast forward four years to a waiting room inside The Children's Center Pediatric Clinic, where Rosa sits with her miracle child. Christopher is comfortably lying on the doctor's table watching a movie, sipping a box of apple juice while receiving an injection that strengthens his bones.
"I had to have a c-section," recalls Rosa. "First, I asked how his organs were. They were fine and healthy. It was basically physical."
Christopher was diagnosed with Arthrogyposis, which is a rare congenital disorder that is characterized by multiple joint contractures and can include muscle weakness.
"Since he has very little muscle, it affects his movement. He doesn't move his arms or his legs. He does move his head."
In December of 2008, Christopher was referred to The Children's Center Pediatric Clinic by his nurse practitioner. Christopher first worked with Edward Wright, M.D. pediatric physiatrist, then Darin Brannan, M.D., pediatrician. He visits Dr. Brannan every three months for pamidronate injections to strengthen his bones.
"He has done very well with the therapies. Generally, the more treatments you get the less chronic bone pain you have," explains Dr. Brannan. "During that process, he has become a happier, less irritable, and easier-to-get-along-with-kid, which is always appreciated by the parents."
Christopher also visits the clinic every six months to get a dexascan to measure his bone density. It is a slow process, but one that is leaving Rosa with hope and peace of mind.
"His bones have been getting stronger and hopefully this time around, they will get even stronger," says Rosa. "We don't have to worry about him fracturing his legs."
Arthrogyposis is not a progressive disorder. Typically individuals, like Christopher, have normal cognition and speech.
"I've started teaching him words in English and Spanish, so he's learned both," Rosa says proudly. "He knows all of his colors, numbers and shapes. All the pre-k stuff he learned before even going to pre-k."
"He doesn't consider himself handicapped," says Dr. Brannan. "He's extremely humorous. The differences are how he has learned to cope with the inability of getting around nearly as well as another kid his age."
Christopher can control his electric wheelchair with the push of his chin, build blocks with a special adaptor, and hold a crayon in his mouth to draw pictures. A picture of Dr. Brannan is his latest piece of artwork.
"Draw a picture of me with curly hair," says Dr. Brannan as Christopher steadies the crayon on the paper. His therapy session is coming to an end. "You put eyes on the back of my head. Oh wait, those might be bald spots."
"There's a saying in Spanish 'Happy as a dog with two tails.' I think that's mom. She's a really happy mom," says Dr. Brannan. "I don't think there's anything that he could be doing any differently that would make her anymore proud."
With limitless possibilities, Rosa says all of Christopher's improvements are due to the staff at The Children's Center Pediatric Clinic. "I feel like I'm getting everything that Christopher needs. If he gets what he needs, I'm happy. My needs are always met there, always."
"It's heartwarming to say the least, and it also makes me think we have done our job," says Dr. Brannan. "To be able to develop that kind of rapport and relationship to where the child and/or the parent feel comfortable enough including us as family. You can't have better praise than that."