Christmas in a children’s hospital? No better gift, couple says

Piper Grace Jarvis was born with congenital abnormalities and was not expected to survive. Five months on, she is in the neonatal intensive care unit at Children’s Mercy Hospital and is expected to go home in a few weeks. Her mother, Tara Jarvis of Kansas City, North, was with her on Tuesday.
Piper Grace Jarvis was born with congenital abnormalities and was not expected to survive. Five months on, she is in the neonatal intensive care unit at Children’s Mercy Hospital and is expected to go home in a few weeks. Her mother, Tara Jarvis of Kansas City, North, was with her on Tuesday. The Kansas City Star

Sometimes the best gifts come as complete surprises — like a jar of Prego spaghetti sauce given last Christmas Eve as a clever way to announce to family Tara Jarvis’ joyous pregnancy.

Prego. Get it?

But the greater gift, and the greater surprise for Jarvis, 29, and her pharmacist husband, Matt, 28, is that the baby, who doctors and the couple were all but certain would be too congenitally sick to survive more than a few days, is on this Christmas Eve not only alive but so much on the mend that she is expected to go home from Children’s Mercy Hospital soon after the new year.

“It’s not that I don’t care about Christmas this year,” Jarvis said Tuesday inside the hospital’s neonatal intensive-care unit. It’s where her nearly 5-month-old daughter, Piper, was born so ill on Aug. 4, the hospital already had a comforting palliative care team on hand to help the parents grieve.

“People ask, ‘What do you want for Christmas?’” Jarvis continued. “This sounds cliché. But I don’t care about gifts at all this year. I’m just glad Piper is here.”

Jarvis, of Kansas City, North, had no previous history of pregnancy problems. In April 2012, the couple had their first daughter, Tallan Hope Jarvis. That pregnancy and birth were trouble-free.

But 26 weeks into Jarvis’ pregnancy with Piper Grace, a routine sonogram at St. Luke’s Hospital picked up fluid on the back of the baby’s head. Initial testing turned up no serious genetic disorders. But more in-depth ultrasound revealed problems both minor and massive.

Minor: Piper had a cleft palate and cleft lip, both correctable with surgery.

Massive: She had a congenital diaphragmatic hernia. It was life-threatening.

The thoracic diaphragm is a sheet of muscle that not only helps the lungs expand and contract, but also separates the organs of the chest from the organs of the abdomen. Her thoracic diaphragm was so torn that parts of her liver, stomach and intestines had squeezed through and lodged themselves into the left side of her chest. As a result, her left lung had yet to develop. At birth, she would struggle to breathe.

Not all diaphragmatic hernias are the same, with some far more severe than others. Children’s Mercy pediatric surgeon Corey Iqbal, 35, said that overall the survival rate is about 70 percent. Physicians are now experimenting with ways to fix the hernias in utero, meaning before babies are born. But Piper’s case was at the far end of bad and not a candidate for such surgery.

Her organs had crowded her heart to such a degree that early ultrasounds indicated she seemed to have what’s known as hypoplastic aortic arch, meaning the heart’s main vessel was so underdeveloped that little blood would flow from the heart to the rest of the body.

That reduced Piper’s survival chances to 20 percent or less.

“If she had the hypoplastic arch,” Iqbal said, “she would have survived maybe hours to days.”

For the remainder of Jarvis’s pregnancy, everyone prepared for the possibility of the worst.

“Everyone wants to hold out hope,” Jarvis said. “But I didn’t want to hold out so much hope and then be crushed by despair and grief.”

At home, they no longer prepared the nursery. To Tallan, they stopped talking about the baby. Jarvis concedes that if not for her first daughter, she’s not sure how she would have survived emotionally.

“I had to be a mom to Tallan,” she said. “That saved me from lying on the floor.”

Alone, in their quiet moments, Tara said, she and her husband would collapse into tears.

Then on Aug. 3, Jarvis went into labor. Piper would be born the next evening.

“We had a photographer in the hallway to take pictures of my dead baby,” she said.

Others were there to capture the child’s footprints. Her care team had already discussed options that no mother should ever need to consider. How much life-saving care did she want doctors to provide if Piper was born with little chance of survival?

About 5 p.m. Aug. 4, Piper was on the verge of birth. When Tallan had come into the world, Jarvis’ nurses tucked the baby’s warm body into her arms. With Piper, she feared the possibility that the nurses would want her to hold her child.

If there was hope for survival, if doctors could successfully get a breathing tube into the baby and her heart pumped the blood, there would be no time for holding. Jarvis knew that only if hope was lost would they put Piper in her arms.

“Holding would mean it’s time to be done,” Jarvis said. “Holding would mean having time to say goodbye to your baby.”

Piper was born. She stopped breathing. Doctors resuscitated her.

“Once her breathing tube went in, she pinked up and her color looked good,” Iqbal said.

Tense moments followed over the last five months. Ultrasounds showed that the aortic arch was not as problematic as early tests had indicated. About two weeks after Piper was born, Iqbal and his team performed surgery to reposition Piper’s organs and correct the hernia. It could take months to years for her left lung to grow and mature, he said.

There will be future surgeries on her cleft lip and palate and perhaps on her heart as well. There are concerns about high blood pressure in her lungs.

But, Iqbal said, “I don’t have any reason to believe that she could not resolve all of these and live a full and fulfilling life.”

For the Jarvises, that is a Christmas gift enough, although they also offered up one of their own. After five months of being in the hospital every day, Jarvis knew she wanted to give some kind of gift back to Children’s Mercy. She had been writing about her plight in a personal blog. To friends and others she put out an appeal for blankets for the hospital.

On Monday, she delivered 857.


To reach Eric Adler, call 816-234-4431 or send email to eadler@kcstar.com.