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Innovation and Research

Rare Disease Awareness and Care

Several Gillette Children's providers are participating in an event at the University of Minnesota on February 25, 2022, to talk about the successes and challenges in caring for rare disease disorders. 

Rare Disease Day is February 28, 2022 and an opportunity to raise awareness about how rare diseases have an impact on people’s lives and our community.

Linda Krach, MD, is a rehabilitation medicine physician at Gillette Children's and a keynote speaker at the U of M event. Krach recently won a prestigious award for her work and is part of a team helping patients who have spina bifida and other rare diseases.

Linda Krach, MD is a rehabilitation medicine physician at Gillette Children's. She's part of a team helping patients who have spina bifida. 

Linda Krach, MD, is a rehabilitation medicine physician at Gillette Children's. She recently won a prestigious award and is part of a team helping patients who have spina bifida. 

Gillette Children's is known worldwide for its expertise in caring for children diagnosed with rare diseases such as Rett syndromespinal muscular atrophy (SMA)acute flaccid myelitis (AFM)Legg-Calve Perthes diseasePrader-Willi syndrome and other conditions. 

A team of Gillette experts work with parents and referring providers create a treatment plan especially designed for each child diagnosed with a rare condition. 

Rehabilitation Medicine Physician (PM&R), Linda Krach, MD, is part of that team of experts and is proud to be a part of the University of Minnesota Rare Disease Day event.  

Krach received a lifetime achievement award for her work as an educator, advocate and skilled provider for patients diagnosed with spina bifida and cerebral palsy. 

In her remarks when she accepted the Gabriella E. Molnar-Swafford Pediatric PM&R Lifetime Achievement Award, Krach said she’s thankful for the commitment and mission at Gillette because it helped encourage her in her long career. Krach also thanked the patients and families she had the privilege to work with. “They have taught me so much, not just about rehabilitation,” Krach said, “but also about life and resilience.

Krach’s colleague, physical medicine & rehabilitation physician, Nanette Aldahondo, MD, wrote a letter in support of Krach’s nomination for the Molnar-Swafford Lifetime Achievement Award. In the letter, Aldahondo calls Krach “one of the pioneers and unsung heroes of pediatric rehabilitation medicine.”

Aldahondo adds, “Dr. Linda Krach epitomizes leadership in research, advancing clinical care, and education.”

Physical medicine & rehabilitation physician, Nanette Aldahondo, MD, says Dr. Linda Krach, "epitomizes leadership in research, advancing clinical care and education."

A strong and large team of spina bifida experts

Linda Krach, MD, says she’s “spoiled” by working at Gillette. “We have such a strong and large team of experts at Gillette I can truly give my patients the very best care,” Krach says.

“For example, if I think a person who has spina bifida would benefit from having a seating expert come in and make some adjustments to make them more comfortable I just pick up the phone and a seating expert shows up right away. I don’t need to tell the family to schedule another appointment or wait for help. We have the staff to take care of these needs immediately and that feels great.”

This multi-disciplinary, team approach is part of the Gillette care model. It means clinical experts from many areas take care of a individual’s needs at once, often during one visit. This clinically integrated care model helps those with spina bifida achieve the best outcome and is helpful to families.

Gillette helps parents and providers make a plan for each child

Spina bifida is fairly common, occurring in one of every 1,500 births, and is a complex condition that requires a team of experts to make sure each child can thrive.

Spina bifida is a group of congenital disabilities (a disability that is present at birth) that occurs when the spinal column does not close completely. A baby who has the most severe form of spina bifida will be born with part of the spinal cord outside of the body. A child with mild spina bifida might not exhibit many symptoms.

Children are often diagnosed with spina bifida before birth, in the second trimester of a pregnancy. Krach says there are three ways to diagnose prenatally. The first way is during an Alpha-fetoprotein screening during the 16th to 18th week of pregnancy. This level is elevated in about 75% of women who have a fetus with spina bifida.

The second method of diagnosis is an ultrasound that might show a fetus with an open spine. The third way is to examine maternal amniocentesis to look at protein levels.

A team of Gillette specialists, including neurologists, orthopedic surgeons, urologists, rehabilitation medicine specialists, therapists, psychologists, social workers, and orthotists is ready to help parents and referring providers create a treatment plan especially designed for each child diagnosed with spina bifida.

The rehabilitation team works together to provide therapies to help a child gain strength and independence. Some children, teens and adults might need equipment such as wheelchairs, seating systems, walkers and orthoses to help with mobility. The Gillette orthotics, prosthetics and seating practitioners are experts in finding the right equipment for each person.

Spina bifida has levels of medical complexity

Spina bifida is a condition with levels of medical complexity and does not affect all people in the same way. Spina bifida occulta often has no symptoms. An x-ray shows one of more vertebrae with incomplete formation. Some children who have this type of spina bifida have pain and neurologic symptoms and might have a tethered spinal cord. Babies born with spina bifida occulta often have normal function at birth but sometimes experience problems later.

Another type is meningocele- a sac protruding through the spinal column defect with spinal fluid and meninges but no neural tissue. Usually there is no nerve damage and children diagnosed with this type of spina bifida might have minor disabilities.

One of the more severe forms of spina bifida is Myelomeningocele which is called open spina bifida or an open neural tube defect. Babies born with Myelomeningocele have a sac containing an abnormally formed spinal cord that pushes out from an opening in the spinal column in the back. The nerves at and below the affected area are damaged or completely absent. This causes weakness or paralysis along with bowel and bladder complications. Babies need surgery shortly after birth to repair the affected area. Myelomeningocele is associated with neurologic impairment and is commonly associated with hydrocephalus—or “water on the brain.” Hydrocephalus might require surgery to help manage the condition.

Optimizing each child's function

Krach says there are many misconceptions about spina bifida. “When people hear someone is diagnosed with spina bifida they tend to make assumptions about that child’s future and what kind of life or job they might have.” She wants to assure parents that with the proper care their child can lead a very full life.

“I have a long history as a rehabilitation medicine doctor taking care of many patients over the years,” Krach recalls. “One of the wonderful things about my current clinical activity is that I am now seeing adults who I had the opportunity to provide care for when they were children. Having this long-term perspective is great. I also appreciate that Gillette gives me the opportunity to participate in clinical research. I’m learning more about the effects of the interventions that we provide.”

Krach and the team at Gillette appreciate working with patients over the long term. “I enjoy working with the Gillette team and parents to understand a child’s needs and to work on optimizing that child’s function,” Krach says.

To make an appointment for spina bifida care at Gillette Children's please call 651-290-8707. Referring providers can contact Gillette for a consultation or to refer a patient by calling 651-325-2200.