O’Brien Receives Patient Praise

Congratulations to Dr. O’Brien in Developmental and Behavioral Pediatrics for his recent patient praise.

“Outstanding client centric approach. Dr O’Brien spent more than allocated time with us, was very thorough, explained his perspectives and possible path forward. Excellent first impression. We are enthusiastic and optimistic about partnering with him.”

Tuberous Sclerosis Complex Clinic (TSC)

At the University of Iowa, a multidisciplinary TSC clinic was formed in 2018. The shared clinic includes pediatric genetics (Dr. Sidhu) and genetic counseling, pediatric neurology/epilepsy (Dr. Ciliberto), and pediatric nephrology (Dr. Harshman). The purpose of this clinic is to provide coordinated, comprehensive care in parallel with guidelines from the TSC Alliance.

Tuberous sclerosis complex (TSC) is an autosomal dominant genetic disorder effecting 1 in 5000-10000 live births. TSC is known for the potential to cause severe neurologic manifestations such as intellectual and learning disabilities, epilepsy, and hydrocephalus. However, TSC is a multi-system disorder that can affect most organ systems including the skin, kidneys, lungs, and heart.

Because this disease has such a broad range of signs and symptoms, across the country, it has become the standard of care for academic institutions to develop multidisciplinary clinics for patients with this disease to provide comprehensive care in an efficient, caring, and multigenerational manner. Often, multiple family members are affected and benefit from comprehensive, family-centered care in a focused clinic.

This quarterly clinic currently serves approximately 50 pediatric patients with TSC. For questions about this clinic or information on how to refer a patient for comprehensive TSC care, please contact 319-356-8427 or email liberty-taeger@uiowa.edu.

Patient Comments for Faculty

Congratulations to Dr. Ciliberto (Neurology), Dr. Hong (Rheumatology), and Dr. Reinking (Cardiology) on some very nice patient comments lately:

“We had concerns about fluid on his head and multiple ER/phone consults said it was fine but I felt better after talking with Dr. Ciliberto, he ordered a second read/opinion & understood why we were concerned.”

“Dr. Hong was wonderful.  I felt she took the time to get all the information & carefully explain her thoughts & diagnosis.”

“Dr. Reinking is a wonderful Cardiologist and easy to talk to about the care for your child!”

Parent Advisors Sought for SFCH Family Advisory Council

Since 1998, members of University of Iowa Stead Family Children’s Hospital Family Advisory Council (FAC) have continued to serve as key partners in improving the quality, safety, and experience of care for pediatric patients and their families.

We are actively seeking new parent advisors to serve on FAC. We strive to foster a diverse and inclusive membership, including severity/complexity of illness, race, ethnicity, creed, color, sex, gender, gender identity, sexual identity, socio-economic status, language, culture, national origin, religion/spirituality, age, (dis)ability, military/veteran status, political perspective, or associational preferences.

Your recommendations for parents to serve as advisors on FAC are appreciated!

FAC Membership Information:

  • Must be a parent or other adult family member of children who are current patients (inpatient or outpatient) at UI Stead Family Children’s Hospital
  • Interested and eligible family members may be invited to submit a formal application and participate in an interview as part of the final FAC selection process
  • New members are required to participate in an orientation session prior to the first meeting
  • Meetings are held every six weeks or so via Zoom; Tuesday evenings from 5:30 – 7:30 p.m.

Qualifications for membership – Parent advisors must be able to:

  • Support UI Stead Family Children’s Hospital’s mission of excellence in pediatric patient care, education and research
  • Demonstrate compassionate interpersonal skills at meetings. This includes the ability to actively listen to others, contribute to council meetings and activities in a positive manner, as well as collaborate with other advisors and hospital staff whose perspectives, backgrounds, experiences, and communication styles may differ from your own
  • Think globally about issues/priorities considered by Council.
  • Effectively partner with faculty and staff to positively impact the health care experience (outcomes, quality, safety, overall experience of care) for children and families at UI Stead Family Children’s Hospital.
  • Commit to serving a two-year term of service and participate in a minimum of six council meetings/year.

Please share your recommendations no later than Tuesday, September 8th to Tami Pollari (tami-pollari@uiowa.edu; VoalteMe, or 319-353-7870).

Fox Named ARNP Supervisor for PICU

I am pleased to announce the appointment of Emily Fox as Advanced Registered Nurse PractitionerSupervisor in the Pediatric Intensive Care Unit.

Emily graduated from Georgia Baptist College of Nursing of Mercer University with her BSN in 2006 and from Emory University with her MSN and Pediatric Acute Care Nurse Practitioner certificate (PNP-AC). Emily is board certified as a Pediatric Nurse Practitioner- Acute Care. Emily has over 14 years of experience working with pediatric patients with more than eight years as a pediatric nurse practitioner. Most recently, Emily held the position of Adjunct Faculty, Pediatric Acute Care Nurse Practitioner Program, at Emory University as well as PICU Pediatric Nurse Practitioner with Neonatal Associates of Atlanta.

Emily will bring a positive attitude and professional experience of which we are excited for!  Please join me in welcoming and supporting Emily in her new role.

Dr. Avery Receives YOU Make a Difference Award

Congratulations to Dr. Kristen Avery (PL-3) on her recent positive feedback and YOU Make a Difference Award from a family’s nomination. From the nomination:

“Dr. Avery has been spectacular since the moment we have met her. When our son was born in July, he lost weight at his first appointment so we had more regularly scheduled appointments with Dr. Avery. She always spent so much time with us and really made sure that we felt prepared and knew how to help our son gain weight. She talked through all of our questions and was so kind with us and our son. We chose to follow her to North Liberty Pediatrics even though it adds an additional drive because she is an exceptional doctor…Dr. Avery was compassionate and so helpful to us as new time parents. She was so good with our son and will do amazing things throughout her career.”

Patient Story Lauding Providers

A parent uploaded praise through the “Share Your Story” link on the children’s hospital website praising several providers, including Drs. Adam Brown and Lori Christensen (General Pediatrics and Adolescent Medicine); and Dr. Christoph Randak (Pulmonary Medicine).

“In September of 2019, AJ was diagnosed with RSV and hospitalized for two days. Fast forward to the first week of February 2020 and AJ was admitted again, but for 3 different viruses this time; the common human coronavirus, parainfluenza, and RSV once again. Different treatments and medications were attempted, but her cough and “junkiness” just wouldn’t go away. It was a CT scan in mid-March (near the beginning of the COVID-19 outbreak) that confirmed a growing mediastinal mass in her chest, which was starting to bump up against her heart and one of her lungs….and she went into surgery to remove the mass less than one week after the CT scan. I was consistently updated during her surgery and all of her care team members spoke to me in a way that I could understand, while maintaining the extreme detail that I desired. From her first stay at Stead to (hopefully!) her last, I can’t speak highly enough about how everything was handled! Putting the life of my child in someone else’s hands was a very nerve-racking, gut-wrenching ordeal for me; especially with her being so young AND during the outbreak of COVID-19. However, I never had a single shred of doubt in her care team at any point in the process and their professionalism, while maintaining the utmost compassion, is unparalleled!”