Once a tiny preemie facing the probability of severe, life-long physical and mental problems, Kaitlyn Burr has come a long way.
Seven years ago, well before she was due to be born, a routine ultrasound revealed that Kaitlyn had spina bifida, a neurological birth defect that occurs yearly in the U.S. in about 1500 pregnancies.
Spina bifida, or myelomeningocele, results when an unborn baby’s spine and the surrounding tissue fail to close, leaving the vulnerable spinal cord exposed. Typically, the opening is surgically closed at birth or shortly thereafter, but by that point, the damage is done; the defect has already caused irreversible injury.
Many children with spina bifida have nerve damage, a lack of bowel and bladder control, hydrocephalus, and motor function problems. They may also have vision problems, learning disabilities, and brain damage, among other difficulties. Historically, spina bifida was not detected in babies until after birth. In recent decades, even as medical technology has improved and SB has been discovered before birth, babies still have had to wait until they were born to have their spines repaired.
Kaitlyn’s parents, Kendall and Shelly Burr of Fall Creek, Texas, were stunned to learn about their unborn daughter’s condition. They feared for her health and future, and with their other two young children, Damon and Audrey, they foresaw a profoundly different life with Kaitlyn than the one they had anticipated.
It wasn’t long before encouraging news came to the Burrs from the National Institutes of Health in the form of a radical prenatal medical trial called Management of Myelomeningocele Study, or MOMS. The procedure was performed at that time in only three U.S. hospitals and with fewer than 200 other SB families. With this revolutionary technique, a c-section is performed on the baby’s mother about 24 weeks into her spina bifida pregnancy. The baby is then positioned back-up and pulled partially out of the uterus so a surgeon can repair the open spine. After the repair, the baby is returned to the womb, and mom is also sewn up. The waiting begins again as mom and baby go through the healing process and gather strength for their next invasive surgery.
The Burrs felt that having this surgery was the right thing for Kaitlyn, but because it was such a limited program there was no guarantee they would be accepted.
That summer, however, the Burrs were accepted into the MOMS program at the University of California San Francisco Medical Center. In July, Shelly and unborn Kaitlyn were wheeled into an operating room attended by many doctors and medical specialists, for a risky hours-long surgery, Shelly’s first c-section. Because the hole in Kaitlyn’s back was fairly wide, Dr. Nalin Gupta, the neurosurgeon in charge of closing Kaitlyn’s lesion, sewed a synthetic patch to her skin to close the opening. This is not an unusual procedure; Dr. Gupta said he expected the skin to grow naturally over the patch by the time she was finally delivered.
In the following weeks, unborn Kaitlyn wiggled and kicked and grew, very good signs for a SB baby.
Birth day number two
Babies who have the in-utero spina bifida operation usually do not go full term; they’re typically born about eight weeks after surgery. Kaitlyn lasted almost ten weeks. On Wed., Sept. 23, 2009, Kaitlyn was born after Shelly’s second successful c-section, weighing 5 pounds, 1 ounce, and stretching out to 17 inches. Her parents were thrilled that her back was healing well, and that she could move her legs and wiggle her toes. The hospital staff were happy to report that she was feisty and vigorous.
Since those first weeks, Kaitlyn has made remarkable progress; her vision has greatly improved, she doesn’t require a speech therapist, and she no longer needs a walker.
Shelly attributes these and other gains, such as Kaitlyn’s ability to learn and go to school, to the MOMS surgery Kaitlyn had before she was born. She says her daughter’s progress is far greater than they could have hoped for. “There are really no outcomes like this [for SB children] without that surgery,” she said. “Kaitlyn has movement all the way to her toes, she’s walking, she’s running some, and she’s doing so well – it is really amazing.”
We Run for Kaitlyn
Shelly and Kendall are both marathoners, and several years ago they decided to run in The Woodlands Marathon Charity Challenges to raise money for spina bifida. Scores of volunteers joined the effort, some coming into Houston from other states. They helped find sponsors, raise money, run the distance, and cheer from the sidelines for Team Kaitlyn runners in the marathons of 2014 and 2015. Their banners and t-shirts announced, We Run for Kaitlyn.
The Woodlands Marathon Management team awards thousands of dollars to the charities whose runners raise the most money in donations. In 2014, Team Kaitlyn came in second place in donations and was awarded an additional $2,000, bringing their total to $22,953. In 2015, Team Kaitlyn placed third in donations, and with $1000 awarded from The Woodlands Marathon team, earned over $8000.
Money raised in both Marathon Challenges was given to charity, including local and national branches of the Spina Bifida Association.
We Run With Kaitlyn
Spring, 2017. The lives of the Burr family have changed significantly. Kendall is a partner in his law firm, and Shelly has gone back to school to become a therapist. Damon is in sixth grade, Audrey is in third, and seven-year-old Kaitlyn is in first grade. The in-utero surgery was not a cure-all and she still has many challenges, but with therapy, the support of her family and friends, and the strength of her own determination, Kaitlyn has come a very long way.
Shelly and Kendall are members of the Fall Creek Ward, Houston Summerwood Stake of the Church of Jesus Christ of Latter-day Saints. They thank God daily for helping them get through the many difficult times their family endured since before Kaitlyn was born, and are thankful this tough little girl is their daughter. “We feel so blessed to have seen God’s hand in our lives so many times along the way, opening up pathways so we could qualify for this surgery,” said Kendall. “And of course, we are most grateful that He gave us the wonderful privilege of having this sweet, beautiful, silly, and perfect little girl in our family.”
The MOMS program for spina bifida babies has undergone its own changes. The study was so successful in its early stages that the actual trial was discontinued in 2011, and the surgery is now recommended for all unborn SB babies. Because of Kaitlyn and other tiny pioneers and their moms, SB children who undergo this in-utero surgery can avoid some of the debilitating problems associated with this birth defect.
In 2017, a different charity received money raised by Team Kaitlyn. On March 3 and 4, the Burrs and friends again ran in several Woodlands Charity Challenge races. They were awarded $3000 for coming in second in donations, bringing their grand total to $29,292. This money was given to Family House. The Family House near the UCSF Medical Center is a guest residence where the Burrs stayed when Kaitlyn and Shelly underwent their surgeries and when Kaitlyn was born, and when they have returned to the Med Center for subsequent tests. One of several such facilities, it is a home away from home for families of children with life-threatening conditions.
This year all the Burrs ran a race together, including Kaitlyn. She walked, and she ran, and she crossed the finish line in the 2K Family Fun Run Walk with dozens of cheering friends and supporters, with Damon and Audrey, and with her mom and dad on either side.
That’s why Team Kaitlyn banners and t-shirts displayed a new slogan this year: We Run With Kaitlyn.