Twins Get Peek into Array of Specialized Therapies

Diagnosed at 23 weeks with a rare brain defect, schizencephaly, Ajla and Audie Leonard have received the advantage of specialized care from a wide range of Children’s Mercy’s health experts.

The Fetal Health Center at Children’s Mercy became a central part of parents Audra Jonas and Anthony Leonard’s lives from early on in Audra’s pregnancy. There, doctors used the high-tech capabilities of the hospital’s 4D ultrasound equipment to identify precisely what was going on in their unborn girls’ heads: the second-rarest brain malformation, which involves slits in the cerebral hemispheres.

The defect can result in a wide range of health challenges, including uncontrollable seizures and severe developmental delays that can require multiple surgeries.

Early care is calming

The NICU’s team of specialists developed a plan of care for the girls, including MRIs immediately after birth. “Ajla was slightly better than they expected, and Audie came out slightly worse than expected,” Audra remembered. “Ajla is missing a small part of her brain on her left side, which causes her to have cerebral palsy on her right side. And Audie is missing almost half of her brain on the right side, causing much worse cerebral palsy on the left side.”

To ensure the girls – who live in Manhattan, Kan. – continue to receive the specific care required, they regularly see health specialists from Neurology and Ophthalmology to Genetics, Endocrinology and Neurosurgery. Audra said she was especially grateful for the compassion of Usiakimi Igbaseimokumo, MD, Pediatric Neurosurgery; Cathy Cartwright, Advanced Practice Nurse; Mandy Thompson, Family Nurse Practitioner; and Jean-Baptiste Le Pichon, MD, PhD, Neurologist.

A future of hope

Audra says the girls’ current condition is “absolutely wonderful – way better than we ever expected life to be after the first telling of the diagnosis.” At 15 months, the girls play peek-a-boo and have developed distinct personalities. Ajla is crawling and loves to mimic her older brother. “She is Miss Priss!” her mom added. Audie is developing at her own pace and is now able to sit up by herself. “She is the quiet one,” Audra said, “but lately has found her voice.”
While the future is uncertain, the parents’ stay focused on looking for signs of seizure or other developmental problems and taking the girls to regular follow-ups. “They are receiving physical and speech therapy and will soon add occupational therapy,” Audra said. “It will help in their development and learning.”

Their regular visits have created a routine that the girls are now used to and have created a real bond with staff members. “Every time we visit, we stop by Fetal Health to say, ‘Hi,’ and they know us all by name,” Audra said.

“I honestly have always felt that Children’s Mercy is like a second home, and everyone there is like family,” she added. “Everyone goes the extra mile to ensure your child is well taken care of and will do anything they can to make them and you feel loved.”

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