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When Dr. Pamela Oatis told Estil Canterbury that her healthy-looking granddaughter was born with a brain stem but no brain, a fatal condition, the then-University of Toledo philosophy professor called the pediatrician a liar.
“She was a liar to me because I was looking at this beautiful baby,” Ms. Canterbury recalled of Nevaeh, who could move her limbs and swallow, and had other reflexes, but died a day shy of six months after her birth in 2006.
“She showed me the MRI, and I just cried for what seemed like all day,” she added. “She was so kind.”
Such kindness and compassion compelled Ms. Canterbury to become a licensed counselor and part of a team working with Dr. Oatis at Mercy Children’s Hospital.
And they have helped shape the nine-member team led by Dr. Oatis that supports families of children with chronic or fatal conditions.
Part of the concept — connecting families with primary-care providers and to coordinate care — is taught statewide through a $900,000 federal grant.
For her efforts, Dr. Oatis recently received the 2011 Elizabeth Spencer Ruppert Outstanding Pediatrician of the Year award from the Ohio Chapter of the American Academy of Pediatrics, an honor named for her mentor at the former Medical College of Ohio. Dr. Oatis has for six years been medical director of Mercy Children’s maternal-child/pediatric palliative care, created to improve the lives of children of all ages who suffer from serious and potentially fatal illnesses.
“Our families keep us going,” Dr. Oatis said. “They’re amazing. They’re inspiring.”
Expectant parents who know that their babies have a fatal genetic disorder and could die at birth get help developing a delivery plan that all of their health-care providers know about, Dr. Oatis said. The plan includes such information as whom the parents want to be present at the birth and whether they want the child baptized, she said.
“They talk about all this ahead of time,” Dr. Oatis said. “When the day comes, they can be fully prepared and enjoy every second they have with that child.”
Last year, the Mercy Children’s team helped Danielle Richardson when her 14-year-old daughter, Jewell, contracted and succumbed to bacterial meningitis in less than two months. Dr. Oatis was Jewell’s pediatrician and answered all of the Toledo mother’s questions, and other team members also were there when she needed help, Ms. Richardson said.
Jewell was in a coma for a month, but she fought hard, came out of it, and, thanks to help from the team, was home for Christmas, Ms. Richardson said. The team still checks on Ms. Richardson.
“That was my Christmas present — that was the best,” said Ms. Richardson, whose daughter died Dec. 29. “Without them, I don’t think I would have made it.”
Dr. Oatis’ Pediatrician of the Year award did not surprise Kate Sommerfeld at United Way of Greater Toledo. The agency has been providing $60,000 a year for a team initiative to help parents of children up to 6 years old find a primary-care provider whose office will oversee their treatment, both improving care and cutting costs.
“Dr. Oatis is an incredible person and leader in our community,” said Ms. Sommerfeld, United Way’s health manager in community impact. “She definitely leads by example.”
Data show that three months after a child is treated at the hospital, 90 percent of those whom the team assists with finding medical homes have shown up for their doctors’ appointments. Ms. Sommerfeld said the team makes parents feel comfortable and understand the importance of having a primary-care provider instead of always using the emergency room.
“That’s a huge issue we’re struggling with in our community,” she said. “They really see Dr. Oatis and her staff as allies.”
Besides United Way funding, the team has a $250,000, five-year grant from the federal Health Resources and Services Administration for the medical home initiative locally. Registered nurse Joyce Roe is the medical home liaison, whose duties include coaching parents on how to choose pediatricians or other primary-care doctors that meet their needs and will take their insurance.
“We build a relationship,” said Ms. Roe, who also helps them compile a notebook with medical records and other information.
“We go in there and we support. We offer them tools to be a better health-care consumer.”
The team, meanwhile, is working with the Ohio Department of Health’s Bureau for Children with Medical Handicaps as well as with Family Voices of Ohio to educate 700 primary-care providers and others on the medical home initiative. So far, 100 primary-care providers have been trained through the $900,000, three-year Health Resources and Service Administration grant awarded in June, Dr. Oatis said.
Other team members provide pastoral care, help with other needs during hospitalizations, put together grief packets, scrapbook with parents, and perform office tasks.
To help counsel parents and grandparents, Ms. Canterbury said she can use her experiences with Nevaeh and with her 28-year-old son, who has cerebral palsy.
Her granddaughter was not diagnosed before birth with hydranencephaly, a condition in which the brain’s cerebral hemispheres are absent and the space is filled with sacs of fluid. Knowing Nevaeh did not have long to live, the family worked with Hospice of Northwest Ohio and relished the newborn, she said.
“We decided to have a birthday party for her every single Tuesday because she was born on a Tuesday,” Ms. Canterbury said.
Contact Julie M. McKinnon at: firstname.lastname@example.org or 419-724-6087.