Tony and Dawn Velez had tried everything to have a child, including in vitro fertilization seven times, but nothing worked, so they finally gave up trying and accepted the reality of their situation. As Dawn puts it, “We said, ‘That’s it; it’s just going to be us and dogs, and we’re OK with that. We’ll just live our lives. It’s in God’s hands.’” And so it was.
One New Year’s Eve, Tony and Dawn were sitting at home when the phone rang. “It was my cousin in Pennsylvania,” said Tony, “and she said, ‘My daughter is pregnant and she already has two children and can’t keep this one, so we immediately thought of you and Dawn.’”
Tony and Dawn said “yes,” and after some legal paperwork and procedural efforts, they adopted Lily on the day she was born. “Lily dropped into our lives on my birthday like it was meant to be,” Tony said.
But there was a problem.
When Lily was born, her spine was curved almost into the shape of the letter “C.” She had severe scoliosis, and there was concern it would interfere with her internal organs as she grew.
The conventional treatment for this kind of condition is to surgically attach the ends of an adjustable rod to the child’s uppermost and lowest ribs and then periodically adjust the rod’s length by three millimeters or so, gradually pulling the spine into a more upright position over a period of several years. The rods work wonders, but each time the rod has to be adjusted, the doctor has to conduct surgery on the child’s back, with all the complexities that entails.
Instead of the conventional treatment, Lily is being treated with a new and much more benign tool, called the MAGEC Rod. She is one of the first five patients to be treated with this technology at Connecticut Children’s Medical Center.
MAGEC Rod Magic
“With the MAGEC Rod, we do adjustments with magnets,” said Lily’s doctor, Connecticut Children’s orthopedist Mark Lee, MD. There are magnets in the rod itself, and there are more magnets in an external adjustment tool that looks a little like a hand vacuum.
When Lily went in for her rod adjustment in March, she lay on the table in Dr. Lee’s office, and Dr. Lee placed the adjustment tool on Lily’s back, turned a dial, and the magnets in the machine moved forward a few millimeters, pulling the rod in Lily’s back in the same direction. Within three minutes, the whole procedure was done and Lily was ready to go home.
“With MAGEC, there will, hopefully, be only two surgeries: One to put it in and one to take it out,” Dr. Lee explained. There are other benefits as well: The MAGEC Rod adjustment can be done in the office in a few minutes, where the conventional rod requires days of prep, surgery and recovery each time it is adjusted.
“Patients with older rods are asking to switch to the MAGEC Rod,” Dr. Lee said.
One More Miracle
With the less invasive approach of the MAGEC Rod, Lily has been able to do all the things a 4-year-old does without spending days recovering from frequent surgeries.
Once the whole process is complete, Lily – who will likely finish treatment in her teens – will live a perfectly ordinary life (or, given how bright and spirited she is, more likely an extraordinary life). She wants to be a firefighter when she grows up, an ambition that has replaced her earlier goal of becoming a flight attendant.
For Tony and Dawn, Lily’s remarkable transformation is one more miracle in an already miraculous story, and they are immensely grateful for it.
“The hospital was phenomenal,” Dawn said. “Everyone really cares. The first time we went for an MRI there, Lily was looking at the Beanie Babies, and she really wanted a tiger, but they couldn’t find a tiger. Then, when she was in the room waiting for her MRI, the security guard came in with two tigers. She brought them to school with her every day. We felt like, ‘This is too good to be true.’”
For more information or to contact our care professionals, please visit the Division of Orthopedics at Connecticut Children’s Medical Center’s webpage.