Caledonia Argus

Fetal surgery patient doing well at one

Posted: 3/11/03

by Jane Palen
Managing editor

Sheís still too young to understand it, but little Gracie Vinson of New Albin is a child that a lot of people are watching. Itís not because of her engaging blue eyes or halo of blond hair, or even her mischievous smileóalthough those certainly attract attention on their own. People from the area were interested in Grace even before she was born. Diagnosed with spina bifida while she was still in her motherís womb, Grace had ground-breaking surgery in utero that was intended to reduce the severity of the disease.

Spina bifida is a neural tube defect in which the spinal cord or its protective covering fails to develop properly. Grace had the ìcraterî form (meyloscesis) of spina bifida. Doctors told Andrea and Graceís dad, Randy, that they could prepare for having a disabled child, terminate the pregnancy or have Grace undergo fetal surgery to repair the defect and hopefully lessen the severity of the disease.

After learning that their insurance would not cover the $38,000 surgery, Andrea went public with a plea for help so that Grace could have the surgery. Local newspapers carried the story, and the New Albin Bank set up a fund for donations. Many people came forward t to help, especially Andreaís employer, Peter Bentz of Duratech in La Crosse. Andrea and Randy traveled to Vanderbilt University Medical Center in Nashville where Andrea and Grace had surgery on December 14, 2001. Surgeons made incisions in the skin over Graceís hips and stretched it to cover the opening over her spine.

Grace was due on April 5, her grandfatherís birthday, but instead was born on February 6, 2002.

ìItís been wonderful, weíve been very lucky,î said Andrea recently. Although there is no way to know for certain how severe Graceís disabilities would have been without the surgery, Andrea is confident that she has benefitted greatly.

Before she was born, Graceís ultrasounds indicated that her head was lemon-shaped, an indication of a Chiari II formation. That symptom reversed itself before Grace was born, and her head now is a normal shape and size. The ventricles in her brain are not changing, which is a good sign, and her head is measured frequently to check for any unusual growth.

Andrea was told that without surgery, Graceís chances of needing a shunt, which drains spinal fluid from the head, stood at about 100 percent. Even with the surgery, her chances were about 60 percent, said Andrea. But there has been no need for a shunt so far, and Andrea continues to hope for the best.

ìWe are pretty blessed,î she said.

Bowel and bladder problems are often associated with spina bifida, but so far those functions are working fine with Grace, Andrea said. She also has feeling all the way down to the tips of her toes, and Andrea is hopeful that she will walk one day. She can stand up for 10-15 minutes with assistance, and small, soft braces called ìsmafosî help her keep her feet flat.

ìThey told us she would be in braces all the way to her hips,î said Andrea. ìThe doctors are pretty amazed.î

Andrea explained that Grace has an L-3 defect with S-2 function. In simple terms, the higher the number, the move severe the defect. In Graceís case, she has the function of a person with a much milder case of spina bifida. A person with L-3 function is generally confined to a wheelchair, she said.

ìHer physical therapist definitely thinks she is going to walk,î said Andrea. ìIt depends on how strong her legs are.î

Grace has physical therapy every other week, and Andrea and Graceís day care provider work with her on a regular basis.

Grace has a head ultrasound every other week, and also sees a urologist, a neurologist, and a orthopedic physician, an ophthalmologist (for a ìlazy eyeí) and a pediatrician. Most of the visits are just to make sure everything is progressing with Grace, and to head off any potential problems.

Andrea gets a lot of support from other parents who have shared her experience, and the internet is a great tool to keep in touch with them.

The type of fetal surgery Grace had is now part of a five-year trial study to determine whether it should be considered experimental. Andrea hopes that other parents facing the same issues her family faced will have an easier time getting the surgery.

ìWe lost, but we didnít lose. Gracie won,î said Andrea of her attempts to get her insurance to cover the cost of the surgery.

Andrea and Randy have two other daughters, Megan, who is in kindergarten, and Macy, 2. Both are great little ìmothersî to Gracie, who is a sweet-natured child.

ìAll my babies were good, but sheís especially good,î said Andrea.

Andrea has developed a web site for parents who want more information on spina bifida and fetal surgery, and for those who would just like more information on how Grace is doing. The address is www.angelfire.com/vt2/graciespage.

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