Fort Bragg couple care for daughter with brain abnomality
Posted July 1, 2010
Updated July 2, 2010
Chapel Hill, N.C. — A Fort Bragg couple was told early in the wife’s pregnancy that one of their twin daughters would not survive long after birth.
Both girls shared the same placenta, but one of them – Abby – developed Dandy Walker Malformation, a severe abnormality of the brain and skull.
Two weeks ago, Abby, now 2, had major brain surgery at UNC Hospitals. It was one of 13 brain surgeries she has undergone since birth.
“She had her first brain surgery at 2 days old. She had a shunt placed,” said her mother, Summer Robinson.
University of North Carolina neurosurgeon Dr. Victor Perry said Abby's problem involves the cerebellum, the back side of the brain, and a blocked flow of brain fluids that caused hydrocephalus.
The shunt allowed the fluid to drain out.
Abby had another problem when the natural suture line on the top of her skull prematurely fused shut.
“It doesn't allow the brain enough room to grow and, over time, they can run in to different problems with development,” Perry said.
Perry and pediatric plastic surgeon Dr. John van Aalst had to make room for the brain to grow. “(We) literally took her skull apart in order to reshape it,” Aalst said.
It’s been a long and stressful journey for the Robinsons, not to mention Abby and her twin sister, Emma.
“Considering everything she's been through and everything that Emma's watched,” Summer Robinson said, “they’re both doing good.”
Abby's father, Sgt. Matt Robinson, came home from military deployment in Iraq to be with his family during and after surgery.
Summer Robinson took part in a head-shaving event back home in Fayetteville to benefit Dandy Walker Syndrome research and also to make Abby feel better about losing her hair before surgery.
“The healing process is going well,” van Aalst said.
Everything seems to be going well now for Abby, and the family prays that the good progress will continue.
“She's an amazing little girl,” Matt Robinson said.
Abby will continue to go to UNC for regular checkups to monitor fluid build-up in the brain and how well her shunt is working. Her surgeons said her prognosis is good and she will continue to improve.
Abby has impaired hearing and vision, but doctors said that might improve. She has even learned some new words.