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.”
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 firstname.lastname@example.org.
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!”
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 seekingnewparent advisorsto 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 (email@example.com; VoalteMe, or 319-353-7870).
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. Bijoy Thattaliyath in the Division of Cardiology recently received a nice patient comment from a family.
“Dr. Bijoy has always been very friendly and professional. We have been very happy with his detailed explanations as well. He has never rushed us through an appointment and makes sure all our questions are answered.”
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.”
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!”