When their twins were born three months prematurely at Bon Secours St. Mary's Hospital in Richmond, Va., Marion Stanley and his fiancée, Shalonda Parker, did not know what to expect.
But through a pilot program in the St. Mary's Neonatal Intensive Care Unit, these parents and others are getting their questions answered and helping the medical team to pick up on small changes in their newborn's health that might signal a problem down the road.
Called the Parent Progress Note, the program encourages parents to assess their children's progress at each visit on a simple form that becomes part of the patient's electronic medical record. The parents can express concerns about test results, feeding issues, discharge plans or other issues.
Dr. Bonita Makdad, chief of neonatology for Bon Secours St. Mary's Hospital Children's Services, developed the program earlier this year after a mother who saw signs of illness in her young son felt frustrated in her ability to communicate those concerns to the medical staff.
"Nobody seemed to get that message from her," Makdad said. "There was a breakdown in communications.
"Why shouldn't we allow parents to write in the medical record?" the doctor thought. "With the emphasis on family-centered rounds, we were missing a note, and that was from the family."
So Makdad started using the Parent Progress Note as a way for parents "to have an unfiltered voice," she said. "It puts them on a level ground with other individuals on the (child's) health team."
The program also has had some additional benefits. Many mothers of children in the NICU are still adolescents themselves, Makdad said, and the Parent Progress Note empowers them to take responsibility for their child's health and helps them to realize that "they are the voice for the child until that child becomes an adult."
The notes also can offer "nice positive feedback" to the medical staff from the parents, she added.
In early October, Makdad and members of her neonatology team presented at the Children's Hospital Association Annual Leadership Conference in Washington, D.C., on the Parent Progress Note program and found a lot of excitement for the idea.
For Stanley, the Parent Progress Note helped clear up some misunderstandings after the Aug. 1 birth of his twins — Salim Amir, a boy born weighing 1 pound 13 ounces, and Amira Kamora, a girl born at 1 pound 15 ounces.
At one point, for example, he questioned why his son was being taken off the respirator for brief periods when he was "struggling so much," Stanley said. "But they told me that the problem is he could learn to depend on (the respirator), and it was better for his breathing to go without it."
At other points during the twins' nearly three-month stay in the NICU, "there were other issues I was confused about," Stanley said, "but they assured me that everything was going as it should."
Now that Salim and Amira are home with their parents, Stanley and Parker are grateful to the staff at St. Mary's who always kept them in the loop.
"We would not have been able to get this far without them," Stanley said. "They gave us our kids' lives, and we thank them from the bottom of our hearts."
Copyright © 2012 by the Catholic Health Association of the United States
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