Navigating uncertainty through palliative care
CHOICES program supports families of children with life-altering illnesses
BY SUSAN KEETER
What’s it like raising a child with a life-threatening or life-altering medical condition?
That’s the answer families and caregivers often give. The uncertainty is rooted in the difficult paths they travel, and the unclear future: Will his sniffles lead to another hospitalization? Can she tolerate the new medication? What’s causing these new symptoms?
Upstate’s pediatric palliative care program helps families navigate the uncertainty.
It’s called CHOICES — Courage. Hope. Insight. Compass. Empathy. Support. Team members provide care from the prenatal stage of development through early adulthood.
A team that understands
“Many people misunderstand the meaning of ‘palliative’ care,” says Liz Hilton of Oneonta, whose 6-year-old daughter, Caitlyn, was referred to the program after two diagnoses: a condition that causes her immune cells to attack her body, and interstitial lung disease, a progressive condition that causes irreversible scarring of the lungs.
“It’s not about giving up. It’s about working with people who understand the complexities of the illness, who see the whole person in the child, and who care for the entire family that is affected by the illnesses.”
Caitlyn was born prematurely and with breathing and feeding problems. She spent her first days in the neonatal intensive care unit of the hospital near her home. She was transferred to Upstate Golisano Children’s Hospital when she was 9 days old. She has undergone multiple surgeries and received care at hospitals in Binghamton, Albany and Boston. Her Upstate doctors are pulmonologist Christopher Fortner, MD, PhD, cardiologist Matthew Egan, MD, hematologist/oncologist Amy Caruso Brown, MD, and hematologist/oncologist and CHOICES Director Irene Cherrick, MD.
Hilton says her daughter, the youngest of six children, has given her greater empathy for others who struggle with illness. Caitlyn has a medical aide at school who monitors her oxygen throughout the day. She sleeps with a mask connected to a machine that keeps her lungs open, and she has a tube in her stomach for food and medications. Despite her challenges, Caitlyn lives a pretty normal life. Her parents and doctors have even come up with a way for her to swim.
They help make decisions
Will Clark was born seemingly healthy, says his mom, Karen Clark of Chittenango. At around 10 weeks old, he began making strange movements, which turned out to be seizures. Upstate neurologist Carl Crosley, MD, who has since retired, taught the Clarks how to give their baby steroid injections and put him on a special diet to help control seizures.
By the time Will was 3 years old, they learned that his seizures were symptoms of a neurological degenerative disease that would slowly take away his “normal”abilities. Will required round-the-clock nursing care, and had developed a serious respiratory condition. Two years later, the Clarks were introduced to the CHOICES program. Will is 16 now, and seizures remain frequent. One evening last winter, Clark called Cherrick, who advised her to bring Will to the emergency department. He needed an anticonvulsive treatment to stop the seizures, but the medication also sedated his central nervous system, leaving Will unable to breathe on his own. Cherrick and the Clarks discussed options.
Clark says she and her husband were grateful to discuss a difficult decision with a doctor who understood their options and knew their child. “We needed honest information.” Together they decided against a tracheotomy — a hole made in the windpipe to help him breathe — understanding that the procedure would likely make it more difficult for Will to ever breathe on his own again. A risky decision, but it worked. Will was able to handle the treatment and breathe.
They’re always accessible
Anna Pavia of Liverpool also relies on the CHOICES team for help in making decisions. “CHOICES bridges the gaps between home and community and the hospital,” she explains. “I text the CHOICES team any time I need to talk through issues. They help us make decisions about care.”
Both of Pavia’s sons have Lennox-Gastaut syndrome, a severe, difficult-to-treat form of epilepsy. Anthony, 12, and Giovanni, 6, were both born with microcephaly. Their skulls were smaller than normal, and their brains have abnormalities including in the areas that control breathing and heart rate. They are blind and unable to speak. Cognitively, they function like 4-month-olds.
The brothers have a team of Upstate doctors, including Cherrick, pulmonologist Zafer Soultan, MD, neurodevelopmental pediatrician Nienke Dosa, MD, gastroenterologist Marcus Rivera, MD, orthopedic surgeon William Lavelle, MD, several cardiologists, and geneticist Robert Roger Lebel, MD.
Pavia is a social worker who works from home, which is important because the boys need round-the-clock nursing care. Her husband teaches at a school nearby. Maternal grandparents live next door. She says the boys are home-schooled. Twice a week, they enjoy music therapy and water therapy – using very warm water because of their temperature sensitivity. She says “they respond well to voices, touch, music and water.”