Cardiology and Genetics Combine to Solve Medical Mystery

“An 11-year-old boy playing baseball stops running, clutches his chest and falls to the ground. He cannot be resuscitated. One of his brothers survives a similar attack and no one can figure out why, until a medical team at the University of Iowa discovered an unknown genetic disorder.”

Charity Nebbe, from Iowa Public Radio’s Talk of Iowa podcast, talked with Dr. Ian Law (Cardiology) and Hannah Bombei, MS, CGC (Medical Genetics and Genomics) to discuss their years of testing and research to stop a disease plaguing an Iowa Mennonite family of eight.

BMT Program Now a Member of PIDTC

Under the leadership of Dr. Arun Modi (Hematology/Oncology), the Bone Marrow Transplant (BMT) program is now a part of the Primary Immune Deficiency Treatment Consortium (PIDTC) – an NIH-funded consortium of select children’s hospitals involved in the diagnosis, cutting-edge research, and new clinical trials for Primary Immune deficiency disorders.

This is a great honor and achievement to be included in the PIDTC. “This is a feather in the cap of Dr. Modi and his BMT team”, says Dr. Yatin Vyas, Division Director for Hematology/Oncology.

Neonatal Hemodynamics Features in Children’s Hospital Today Magazine

The neonatal hemodynamics program within the Division of Neonatology was the feature of an advertisement in the winter 2020 edition of Children’s Hospital Today, a news magazine of the Children’s Hospital Association. The 2-page spread featured quotes from Dr. Patrick McNamara (Division Director) and Dr. Regan Giesinger as a hemodynamics expert.

Patient Comments for Faculty

Several faculty received very nice comments recently for their dedication to patient care.

For Dr. Gupta:

“Dr. Gupta was amazing, he took his time with us and explained things that we had additional questions on. Our Ultrasound Tech. (Kristy or Kristin) was amazing! As the parents are nerves were high and our daughter was very scared and anxious! She did an amazing job at calming us all down and had a wonderful bedside manner!”

For Dr. Hanna:

“We had a great experience with Dr. Hanna. He helped explain things in a way that my daughter could understand and she felt very comfortable with him. Which really felt like he cared and wanted to help.”

For Dr. Koestner:

“Dr. Koestner was excellent during our stay.  He was attentive and always answered all our questions. He was wonderful.”

NICU Praised in New Book


Journalist and mother Sarah DiGregorio praises the UI NICU in her new book, “Early,” (Harper Collins, 2020) a deeply personal study of premature birth in the United States.

Inspired by her own harrowing experience giving birth to her premature daughter, the book is a compelling and empathetic work that combines memoir with rigorous reporting to tell the story of neonatology—and to meditate on the questions raised by premature birth.

Ms. DiGregorio also speaks about the book and her experiences on NPR’s On Point podcast.

Specifically, page 188 of the book makes some exemplary comments at the NICU at the UI Stead Family Children’s Hospital.

Dr. Paternostro Receives Positive Patient Comments

Congratulations to Dr. Paternostro (Developmental and Behavioral Pediatrics) on receiving a pair of very positive comments from families recently.

“Jena is so amazing. My daughter is a very shy, difficult to open up and Jena has helped her to work on her emotional needs. Jena has been helpful as a parent giving ideas and books that will help improve the outcome of our daughter. Thank you!”

And also:

“When the nursing/MA staff was busy rooming patients, Jena just came and got us to prevent a long wait time. This was much appreciated.”

Garton Receives “You Make a Difference” Award

Congratulations to Seth Garton, MS, RCEP, an Exercise Physiologist in pediatric cardiology for a recent You Make a Difference award as nominated by a patient’s family. From the nomination:

“On Wednesday, Oct. 16, 2019, I had a scare at home with [our daughter] as we didn’t know her pacemaker was malfunctioning. We called UIHC and cardiology dept to see what needed to do and got all our answers. Mark Olsen told us to get [her] out here ASAP. So I did. I was so scared. But when I got here, they took her back and were so good to her even when she was scared. They comforted me and [our daughter] the whole time. But the really scary part was in the elevator coming back from the chest x‐ray when she had a spell and he was right there and comforted [our daughter] and made sure she was ok and not scared. He walked slowly beside her as I pushed the wheelchair she was in and made sure he had his hands ready to catch her while walking backwards. He’s an amazing young man that will do Great and Amazing things for this hospital and any adventures he pursues! [We] thank you so very much!”

Drs. Cooper-Brown and O’Brien Receive Stellar Patient Feedback

Dr. Linda Cooper-Brown and Dr. Matt O’Brien

Linda Cooper-Brown and Matt O’Brien from the Division of Developmental and Behavioral Pediatrics received some amazing feedback from a parent who adopted an infant with Down Syndrome and felt the help provided by Drs. Cooper Brown and O’Brien was life-changing.

“After receiving a holiday card, I just wrote a check to the University of Iowa but it didn’t feel like enough. How can a monetary amount express the gratitude I feel for the institution that saved my daughter’s life on more than one occasion? Beyond that, it’s an institution that has supported us throughout every step of her development. You see, my husband and I adopted an infant (Josie) with Down syndrome. Her adoption was inspired by my sister, Leanne, who also has Down syndrome. The unforeseen components of her adoption were her surgical needs (cardiac caths, VSD repair, g tube placement), chronic lung disease (multiple hospitalizations to treat respiratory distress) and eventual behavioral needs. The practitioners involved in Josie’s care are too numerous to list but we are forever grateful to each and every one; in fact, I have an “I believe in Miracles – U of IA Children’s Hospital” license plate frame on my car. However, I would like to take a moment to highlight what is an invaluable resource at the University of Iowa that deserves far more recognition, funding, and accolades: The CDD Behavioral Psychology Department.

Upon placement of her g-tube, Josie lost her instinct to eat orally; a common challenge with g-tube dependent children. We tried everything to teach her to eat but nothing worked. Eventually, we found ourselves in Dr. Linda Cooper-Brown’s intensive feeding clinic. Oral food consumption – a skill we had worked on for two years to no avail – was a skill that Josie acquired within two weeks of seeing Dr. Cooper-Brown. It was a miracle! Nearly two years later, we found ourselves living in North Dakota and suddenly Josie refused to eat orally and we reverted back to g-tube dependence. I made a desperate phone call to Dr. Cooper-Brown and we took a pilgrimage back to the University of Iowa, where Josie’s feeding issues were corrected within a week.

Fast forward to Josie’s Kindergarten year when she experienced a sudden onset of autism symptoms including self-injurious behaviors: I called Dr. Cooper-Brown. She welcomed us back to her clinic and introduced us to Dr. Wacker and Dr. O’Brien. With their professional expertise, we were equipped with the tools we needed to eliminate Josie’s self-injurious behaviors and encourage positive behaviors, growth, and development, both at home and at school.

We recently returned to see Dr. Cooper-Brown and Dr. O’Brien to check in and discuss strategies for handling challenging behaviors going forward. Even on my hardest days with Josie, I feel comfort and support knowing that the CDD Behavioral Psychology team is just a phone call/MyChart message away. That peace of mind is invaluable.

I have documented our journey on our Down syndrome blog: http://www.confessionsofthechromosomallyenhanced.com/2014/03/freedom-from-g-tube-dependency-part-2.html and Instagram account @CatfishWithKetchup. I have fielded many questions and referred numerous parents to the CDD Behavioral Psychology team because I believe this resource is life-changing and I hope that more people can become aware and take advantage of it.

If I could express my gratitude for the impact that Dr. Cooper-Brown and Dr. O’Brien have made on our lives and return the favor, I would be privileged to have the opportunity. This is why I am compelled to write this testimony. Thank you for the incredible work that you do. And please continue to offer a comprehensive care plan for all patients so that they know that throughout any hardship in their journey, the University of Iowa has a resource and is a valuable support.”

Two Epic Upgrades Coming in December

There are two important Epic upgrades coming in December.

  • December 7 – 2019 System Upgrade
    • The next system update to Epic goes live December 7th at 1:00 AM. Check out the Epic Report Support Site for a full deck of upgrade slides.
    • Beginning October 28, providers can also begin practicing with the new Epic layouts and features in the Epic Playground.
    • There will be drop-in help days established in the near future so any provider can drop-in and get some help with the new updates, as needed.
  • December 17 – MyChart Proxy Access update
    • UI Health Care has decided to provide parents and legal guardians with full access to their child’s information via MyChart up until 14. At that point, they can continue to view their child’s MyChart account, but with a limited level of access to information. They can print immunization records, send messages to clinic staff, and pay bills. Additionally, parents and legal guardians always have access to any portion of their child’s medical record to which they are legally entitled. They can request this information via MyChart or in a letter addressed to Health Information Management Department.
    • This change from full to limited access in MyChart for parents and legal guardians when the child turns age 14 will go into effect on December 17, 2019.
    • Additionally, if the patient has a long-term chronic illness, we have now created a new type of MyChart Parental/Legal Guardian (Unrestricted) Access.  This allows providers to grant full parental/legal guardian access after the child turns 14 years old.  This access is good for one year and needs to be renewed annually if appropriate.  Providers will need to have private conversations with both the patient and parent/legal guardian before access can be granted. 
    • Additional resources can be found here or here.