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Health In Action Blog
Cincinnati Children’s High-Risk Infant Follow-Up Program
Dr. Tanya Cahill, Medical Director of Cincinnati Children’s High-Risk Infant Follow-Up Program (HRP), discusses the program's importance and shares inspirational stories. Cincinnati Children’s received a CVS Caremark Community Grant to help expand its developmental testing program and guide unique therapeutic interventions for patients.
What is the High-Risk Infant Follow-Up Program (HRP) and how long has the program been in place?
The High-Risk Infant Follow-Up Program is designed to follow infants who have been discharged from a NICU and require some special assistance for the first few years of their lives. We follow babies who are born too early with birth defects or have health problems after birth requiring specialized care. The program was created in the early ‘90s and has grown significantly since that time.
When did you get involved in the program and what is your current role?
I first worked in the clinic during my pediatric residency training at Cincinnati Children’s and continued through my fellowship in neonatology, a subspecialty of pediatrics focused on the medical care of newborn infants. After training, I stayed at Cincinnati Children’s, working both in the NICU and in the clinic setting. I am now the medical director of the High-Risk Infant Follow-Up Program.
How many children does the program support? What types of services does the High-Risk Clinic offer?
We have between 500 and 800 active patients at any given time. We typically see babies from the time of discharge from the NICU until the ages of two or three. We are constantly transitioning patients out of the clinic as their need for specialized care decreases and welcoming newly-released babies into the program.
Patients see a variety of staff at each visit, including a nutritionist, social worker, occupational or speech therapist and physician. Nursing staff is intimately involved, both during clinic hours and any other time the family may require their assistance. Our nurses answer questions, help families with resources and coordinate the complex and unique care for each child.
What are Cincinnati Children’s main goals for the High-Risk Infant Follow-Up Program?
Our main goal is to help support the transition of patients from the NICU to their homes. Given the long lengths of stay in the NICU and complex medical care required, families are often overwhelmed when it comes time to take their baby home. Our nurses and physicians make themselves available by phone at any time, day or night, and our clinic appointments are timed at intervals to meet each patient’s need.
We strive to help parents become more confident and independent in the care of their children. When all is said and done, we hope that our care has helped each child obtain his or her maximum developmental potential.
How has the recent gift from CVS Caremark helped to advance the program?
The gift from CVS Caremark has helped us expand our developmental testing program. The information obtained from this testing helps us guide therapeutic interventions for each child and also provides us with information that helps us advance care provided in the NICU.
Do you have an example of a success story from a child who has participated in the program?
MM* is a 2-year-old boy who was born 4 months early to an older mom. This was her first success at getting pregnant and she wanted him so badly. His birth was sudden and complicated and required emergent delivery. He was extremely small and sick, weighing less than a pound at birth. His NICU course was also complicated and there were multiple times when his mother was advised that he would not survive. She kept fighting for her son and after eight long months in the NICU, he was finally able to go home with a tracheostomy/ventilator, feeding tube and a tough road ahead.
During the first several weeks at home, his mother needed as much support as possible. Our nurses in the clinic were in frequent contact with her as she became comfortable being his primary care provider. Since that time, he and his mother have worked hard in therapies and have been diligent with follow-up care in our high-risk clinic. During this time, he has been able to come off of his ventilator, smile and interact with his mother and sit independently. He has now been transitioned into other clinics at Cincinnati Children’s where his care and developmental progress will continue.
Do you have any personal stories about the impact of the High-Risk Infant Follow-Up Program that you’d like to share?
I strongly believe that the love and support of family, friends and a skilled medical team can truly change outcomes for our patients. PG* is a 2-year-old boy who was born emergently because his heart rate dropped dangerously low and his mom wasn’t feeling him move. Despite the best efforts of the medical team to get him delivered, he suffered a severe brain injury. His mom’s pregnancy had been uncomplicated to that point, so his parents weren’t at all prepared to care for a newborn with complex medical and developmental needs.
Throughout the first few months, our team worked with his parents to help them find the right interventions for his specific needs. We also helped them adjust medications and identify and begin therapy programs in order to maximize his progress. Without the support of our team, they might not have known about the services and resources that were available for their son and that have helped him achieve significant developmental progress. This family has shown me that even in the worst situations, love and support can truly make miracles happen. They have never given up on their son and it inspires me every day to fight for my patients and their families.
All Kids Can thanks Dr. Tanya Cahill for speaking with us about Cincinnati Children’s High-Risk Infant Follow-Up Program and for helping children of all abilities on their path to better health.
*All names have been changed to respect patients’ privacy.
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