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.”