“When Shalan and Kyle Knapke found out that their daughter Adira would be born without a fully developed right ventricle, they turned to UI Stead Family Children’s Hospital. “We are so blessed to have such an amazing hospital nearby!”
Once a week, 12-year-old Ben Schussler boards a 9 a.m. plane near his hometown of Eagan, Minnesota, and flies – usually with either a parent or a “Ben’s Team” member – to the Eastern Iowa Airport in Cedar Rapids, Iowa. From there, he and his escort drive 25 minutes to the clinical research unit located within University of Iowa Hospitals & Clinics.
Clinic staff all know Ben, and he enters the clinic and heads to his infusion bay, where for an hour he’ll receive an experimental treatment for Duchenne muscular dystrophy (DMD). After the infusion, staff will monitor Ben for side effects, and on some days he has to have a blood draw to test progress. He’s usually back home by 7 or8 p.m. that same day.
Ben is part of a clinical trial testing to see whether a new therapy will change the progression of Duchenne muscular dystrophy, says Katherine Mathews, MD, pediatric neurologist at University of Iowa Stead Family Children’s Hospital and the UI’s principal investigator for the study in which Ben is participating. DMD is a genetic disorder marked by progressive degeneration of the muscles and increasing weakness.
Dr. Mariko Sato (Hem/Onc) and Liuska Pesce (Endo) were featured in a touching patient story on the UI SFCH website about a child in the pediatric brain tumor clinic. The story highlights the multidisciplinary care provided here at the hospital, and includes pediatric subspecialists from other Departments as well, such as ophthalmology and radiation oncology.
“A decade earlier, her happy, easygoing little boy had died just after his second birthday. And now here she was, pregnant with twin boys, hoping against hope that they wouldn’t have the same mutated gene that killed their older brother. So when Alyssa Martin found out 21 weeks into her pregnancy that they, too, had inherited the faulty DNA, “it just felt like the end of the world,” she said.
This time, though, Martin knew what she was up against. While she was still pregnant, she and a team of doctors devised a plan to try to save the twins. The boys’ best hope was an experimental drug — a form of copper injected under the skin twice a day — designed to counteract the effects of that mutated gene, which wreaks such havoc on the body’s copper levels that it often kills boys before age 3. If the medication was to have a chance of working, doctors believed, it was crucial that the twins get it within weeks after birth — so time was of the essence.
But getting that drug to Charlie and Kolton Martin proved to be harder than anyone imagined.”
The new Genetics Cancer Predisposition Clinic was started in April 2018. This is staffed by Dr. Alpa Sidhu in Genetics and Dr. William Terry in Hematology/Oncology, with genetic counselors- Kyle Dillahunt and Karin Panzer. Patients seen in the clinic include (a) Pediatric and adult presymptomatic/asymptomatic hereditary cancer predisposition evaluations, (b) Evaluation for genetic syndromes with an associated oncologic risk, and (c) Treatment and ongoing care of affected pediatric oncology patients with a suspected underlying cancer predisposition syndrome. Providers should contact Kyle Dillahunt or Karin Panzer to make referrals.
Dr. Sidhu – fourth Wednesday of every month at IRL
Dr. Terry – Monday and Wednesday mornings at SFCH11
Congratulations to Noy Vongmoukda, who works in the Insurance Pre-Authorization office, and her family on the birth of her son, Koda Sengchanh Xayasene. Koda was born January 21 at 8:13 AM, weighing 8 lbs, 10 oz.
Dr. Sarah Haskell had a baby girl! Dr. Haskell and her husband, Dennis Firchau, recently had a baby girl – Greta Ann Patricia Firchau, born 1/18/19 at 9:09 AM, weighing 6lbs, 12 oz.
The Department of Pediatrics is beginning a pilot study to test the use of scribes in the Pediatric Specialty Clinic and the Developmental and Behavioral Pediatric Clinic. The pilot will continue for 3-6 months with the goal of determining the impact on both the patient experience and the provider experience, using defined outcome measures. These measures include: provider burnout, time spent completing documentation, coding accuracy, and patient satisfaction. Four faculty in two specialties (endocrinology and developmental and behavioral pediatrics) will participate in the pilot, with the hope that the results will provide data to justify a broader use of scribes beyond the pilot period. The Department will be updated after completion of the pilot study.
Dr. Resmiye Oral recently participated in a Fulbright Scholar program in Athens, Greece. She presented several topics, including talks on a multidisciplinary-Interagency response to child sexual abuse; Hospital-based Child Protection Teams and the Child Advocacy Center Models; and the management of physical and sexual abuse cases. The event was sponsored by the Fulbright Foundation in Greece as well as the Society for the Prevention of Cruelty to Children.
Dr. Goins-Fernandez received her BS in Psychology from Xavier University of Louisiana in 2000. She completed her pre-doctoral internship at Butler University/BehaviorCorp (a consortium) in 2009. Next, she received her PhD in Counseling Psychology at the University of Iowa in 2012. Upon graduation, Dr. Goins-Fernandez worked as an Adjunct Professor for Mount Mercy University and as a Research Associate for the University of Iowa Hospitals and Clinics until 2014. Most recently, Dr. Goins-Fernandez worked as a licensed Psychologist for the Belin-Blank International Center for Gifted Education and Talent Development, Assessment and Counseling Clinic.
We have recruited Dr. Goins-Fernandez for outpatient neuropsychology and psychology testing services. Please join us in welcoming Dr. Goins-Fernandez to the Department!
This program targets present or future faculty in academic pediatrics who wish to build their skills in educational scholarship. Educational scholarship is the development, implementation, evaluation and/or dissemination of educational interventions or evaluation methods by a creative, planned and rigorous process that is consistent with best practices in the field and reviewed by peers for excellence.