Schwartz Center Rounds spotlights parents’ perspective on painful prognoses
As a cold rain beat on the window, Catherine Terhune savored the warmth and weight of her daughter’s body against her chest, enjoyed the slow, raspy music of her baby’s breathing that beat out the rhythm of another miracle.
This is what hope feels like to a parent who was told she would never hold her daughter alive. This is what it sounds like to a mother who was told she’d never hear her baby’s breath.
“I now have all the faith in the world that Battley will make it past her first birthday,” said Catherine Terhune.
While such hope may be courageous, it is not especially rare, if the December session of the Schwartz Center Rounds was any indication.
At the invitation of Dr. Rick Boyte, director of pediatric pain and palliative medicine, Terhune was one of several mothers who told their stories linked to the topic, “Supporting Hope during Serious Illness: Pediatric Cases.”
While the aim of Schwartz rounds is to help the hospital community better understand a certain issue, in this case, Boyte also wanted to give parents a chance to describe what they’ve been through.
Dr. Rick Boyte, far right, introduces the panel.
“People find it healing just to talk,” he said. “Most parents are like the ones who spoke that day. What we are seeing with them is fairly common.”
What physicians, clinicians and others see is the persistence of hope chafing against prognosis. They see it in the lives of the mothers who accepted Boyte’s invitation: Catherine Terhune of Gluckstadt, Lauren Casavechia of the Scott community near Greenville, UMMC nurse practitioner Jodee Newell of Madison and Karen Golden of Raymond, whose friend Anna Eldridge, a pediatric nurse, supported her during their overlapping pregnancies.
They see it in the lives of the children who are the source of that hope.
“There have been many times when I have seen a recovery much beyond expectations,” Boyte said. “That was the case with these children. Even with the child who eventually passed away, he lived longer than expected.
“And the others are thriving more than expected. Are they miracles? I guess it depends on what you would call a miracle. To me they are miraculous.”
Here are the stories of two of them.
March 22, 2012 was the first Thursday, and the first day, of her life, and it was supposed to be the last one.
She has now seen more than 40 Thursdays.
“Our doctors gave us no hope for her to be born alive,” said Catherine Terhune.
“Our goal was to hold her and let her know she was loved. Beyond that, we didn’t even know we could take her home.
“We didn’t let our minds go that far.”
Battley has Trisomy 18
. She was born with an extra 18th chromosome. Among her many health problems is a hole in her heart.
She has a cleft palate and must take nourishment through a feeding tube. She eats four times a day, two hours each time.
Catherine and her husband, Adam, learned that Battley had the disease long before she was born.
“Some people said, ‘Why don’t you have an abortion?’” said Catherine, who also has a son, Hayden, 14. “Or, ‘I can’t believe you would bring a baby like that into this world.’”
The time and care Battley requires has taken its toll on the work – and personal – lives of her parents. That is the case with many couples who care for children struck by a serious illness, Boyte said.
“It often causes breakups. The divorce rate is huge.”
Catherine admitted there has been tension in her marriage.
“For one thing, it bothers me when people complain about little piddly things. But Adam and I avoid taking it out on the complainers. So we take it out on each other.
“You take it out on the ones you love.”
The marriage wouldn’t have survived if it wasn’t a strong one, Adam said.
“So that is a testament to where we have been and what we can get through.”
Besides, he said, Battley has been through much more.
”She keeps defying everyone’s expectations and all the statistics that have been thrown at us.”
In spite of predictions, Battley has grown stronger. She is no longer a candidate for surgery to repair the hole in her heart. She can’t walk or talk, but she can smile.
Adam believes he has even heard her laugh.
“A little belly laugh,” he said.
Battley’s progress has multiplied her parents’ hopes. It has allowed them to plan something they didn’t dare think of before: a nursery.
“I believe attitude is 99 percent of everything you face in life,” Catherine said. “We could dwell on what our daughter has and have a bad life, or enjoy her every day and have a good one.
“I don’t know if it’s worse to lose a child at one day old or when they’re 35. Either way, it’s not natural. We’re just happy to know Battley, because she is so cool, and we love her.”
In his short, yet unexpectedly long life, Hayden Casavechia did more in 14 months than most children do in 18 years.
Those are his mother’s words, the words of Lauren Casavechia.
On June 1, 2011, she and her husband, Brent, had their first child, who was apparently a healthy baby.
They had no warning that Hayden would be born with a disease whose name was almost as long as he was: adenylosuccinate lyase deficiency (ASLD)
, a condition so rare that as of late last year, there were only 50 published cases, according to the information consortium Orphanet.
For Hayden, ASLD meant almost constant seizures.
“We were told he had no hope of walking or talking or living long,” said his mother. “But not to lose hope.”
Instead, his parents were almost paralyzed with despair and indecision.
“It was pretty much, ‘Our lives are over,’ ” said Lauren. “How would we tell people? What would we do?
“But if we had lived that way, Hayden would never have lived the way he did. We had to snap out of that real quick.”
It took them about 24 hours. The morning after the diagnosis, she said, they decided to make every day count.
“We had to work fast.”
They decided to give their son a life of quality, rather than extend it with treatments that would also extend his suffering.
They celebrated Hayden’s birthday every month. They took him on trips to his favorite place, the beach.
Lauren started a blog to record Hayden's life
“Within six months, it had 70,000 viewers from 16 countries,” she said. “People wanted to know how we kept up our attitude. That was one way we kept hope – we were trying to help other people keep theirs.”
With friends and family also picking them up, Hayden’s parents did not anticipate his future in years, but in cherished milestones.
“He made it to six months. Then I hoped for a year,” said his mom. “Cooing was a milestone. When he gained a pound I considered that an awesome privilege.
“My hope wasn’t for him to roll over or walk. Because I knew that wasn’t going to happen. I just hoped he would smile.”
Last summer, on the way to the beach, Hayden began taking only two breaths per minute. His parents turned the car around and rushed him to the hospital. He died on Aug. 16.
“He affected so many people,” his mother said. “We still talk about him whenever we can. We have to be proud to tell an angel’s story.
“If it helps other parents gain hope, that is my hope.”
The bad days for Lauren are often the cold ones, or when the rain beats on the window, and there’s nothing to do.
“But you never know when a bad day is going to come. I see a baby . . .,” she said, her voice trailing away.
“Hayden had 50 to 100 seizures a day,” she resumed finally. “So I just try to remember that now he is walking and talking, and his seizures are gone.”
Karen Golden of Raymond
, mother of Grace Elizabeth Golden Diagnosis:
Grace has occipital encephalocele (a protrusion of brain tissue), aegenesis of the corpus callosum (partial or complete absence of the nerve fibers connecting the two hemispheres of the brain) and microcephaly (abnormal smallness of the head)Prognosis:
poor; parents were given the option to end the pregnancy Reality:
Grace will turn 2 on March 4.
“We had peace that we were chosen to be her parents, and that we could handle whatever happened. With children, there is always hope.”Anna Eldridge of Jackson
, an R.N. and friend of Karen Golden
“Parents already have hope; they don’t need us to give it to them. But they do need us to encourage them.”
, a nurse practitioner and member of the palliative care team at Batson Children’s Hospital, mother of Taylor NewellDiagnosis:
Taylor has lissencephaly, a malformation that prevents healthy brain development.General prognosis:
varies, depending on extent of the malformationReality:
Taylor is 8 years old.
“Every time she gets a cold, I wonder if this is the cold that’s going to kill her. But being with her gives me hope every day to live life to the fullest. Love your children, kiss them. Every day.”