Every year, St. Joseph's Hospital performs close to 300 pediatric open-heart surgeries. Of those patients, some children will never need another surgery again. Some children will need at least two, and some children will need 3,4,5 or more, or a lifetime of surgeries and visits to the cardiologist. Of those 300, the top 20 highest risk patients are automatically enrolled in the CHIEF Program. Highest Risk means they are most vulnerable to die a sudden death caused by their heart condition.
The CHIEF (Complex Congenital Heart Infant Evaluation and Follow-up) Program is a home surveillance plan, adapted from the home monitoring program developed by the Children's Hospital of Wisconsin. Scarlett was sent home back in March (after her first open heart surgery on Feb. 25) on a feeding tube, and a pulse-oximeter machine. The hospital gave us a red notebook "the CHIEF notebook" with information on Scarlett's heart condition, her medications, her doctors, her feeding(s), and the CHIEF program.
To quote from the red notebook "While many children with complex congenital heart disease are stable enough to go home from the hospital after their first operations, they are still at high risk for complications due to the nature of their heart disease. Because these children have to maintain a very sensitive balance in their oxygen flow and their hydration, even a small change can lead to a critical or life-threatening situation. Many of the children enrolled in this program have only a small (3-4mm) tube that brings blood to the lungs to get oxygen, and this is their only supply of blood to the lungs. If the child becomes dehydrated, that shunt can develop clots and close off. For this reason, even a minor illness in these children needs to be taken very seriously and parents are instructed to call the nurse-on-call to expedite triage with the cardiology team."
"The CHIEF program involves frequent office visits and phone contact with the caregivers of these patients, in order to closely monitor their oxygen saturations and weight gain. Each CHIEF infant has an individualized care plan and will be seen weekly, biweekly and/or monthly depending on the infant's status"
"Use of pulse oximetry and weight trends in this group of high-risk patients has also been found to be helpful in determining timing for the next stage of surgical intervention. At approximately 4-5 months of age, or when the pulse-oximetry trends are consistently in the 70% range or the child begins to fall off their individual growth curve, the next stage of repair is usually indicated. (meaning time for surgery #2 or #3). The patient's circulation (after second or third surgery) is deemed more stable and the child will graduate from the CHIEF Program."
Me, nurse Asia and Scarlett
Dr. Lane, Beth and Scarlett
Today was a big day for Scarlett. She and 17 other babies graduated from the CHIEF program. It was a beautiful ceremony in the Healing Garden of St. Joseph’s Hospital (in Phoenix). They served a really nice brunch and had a celebratory cake (it was beautiful!). This was the 2nd CHIEF Graduation ever held, and I took tons of pictures.
All the heartmoms and heartbabies honored today
us with Dr. Pophal (her cardiologist from now on)
Todd, Scarlett and "the God" Dr. Cleveland. (he saved her life!)
It was nice to socialize with other heartmoms, and to see ‘former graduates’ in attendance. I had no idea that Scarlett was in the top 20 “high-risk” category. I knew she was CHIEF, but I guess I didn’t realize how dire her condition really was.
What a wonderful program for St. Joe’s to offer and what an extremely thoughtful idea to honor and recognize all the heart babies and heart parents of these extra special and fragile babies in a graduation ceremony.