“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
The NICU was featured in an online article for the Waterloo-Cedar Falls Courier. The article, titled “Dysart ‘miracle’ twins, born 18 weeks premature, making history” is about a recent pair of twins in the NICU born at just 22 weeks and one day gestation, among the most premature surviving twins born at the University of Iowa Stead Family Children’s Hospital.
Dr. Jon Klein, NICU Medical Director, provided quotes for the article.
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.
Congratulations to the NICU team and pediatric nephrology providers (Dr. Lee-Son, specifically) for being highlighted in a SFCH Parent Blog entry about providing excellent patient care. Congratulations to all!
From the UISFCH Facebook page: “We see Dr. Scott Lieberman. When I needed 4 of my children seen by him he took a full day to see all 4 at once since live over 4 hours away. Dr. Lieberman is VERY thorough and takes his time. I have nothing negative to say about him. I have been a medical mom for 8.5 years and have seen countless doctors for my little ones. Dr. Lieberman is in the top 1%!! Thank you IA City for hiring such an AMAZING Dr!!!”