Perinatal hospice care helps parents welcome their baby, then say goodbye

CHICAGO — Keara and Rory Burke were thrilled to learn their family was expanding with a fifth baby, a boy, to join their four beautiful girls.

But Keara's 20-week ultrasound raised concerns. With more tests it was confirmed that their baby had Trisomy 18, a rare genetic disorder that causes developmental delays in the brain and significant medical problems, most commonly in the heart. Many babies with the condition don't survive the first year of life.

“You are devastated, you have profound grief, you are scared, nervous. An option that was offered to us was termination, and for us that wasn't an option, so we decided to carry the baby to term,” Keara said.

That's when the Burkes met Dr. Natasha Henner, a neonatologist at Lurie Children’s The Bridges for Palliative Care.

Henner not only helped them understand their baby's complex medical condition, but also walked them through all of their options, including perinatal palliative care.

“Parents make a range of decisions, from terminating pregnancy, to continuing to carry to term and just letting nature take its course, to providing more high-level technology intervention to support their life as long as they can," Dr. Henner said. "Nobody picks the same thing. I think it’s our job to make those choices clear.”

For the Burkes, less was more.

“The comfort care, loving him, spending time with him free of tubes and wires and invasive medical measures. We wanted his time with us to be painless and just full of love,” Keara said.

Rory said he just, "wanted Keara to see him, hold him." And she did.

“He was put skin to skin on me, which helped regulate his temperature, heart rate, his respiratory,” Keara said.

Baby Rory was born June 12. He met his sisters, who gave him his first bath. Dr. Henner said Baby Rory also responded well to being with his mom.

“And she would talk to him, and he would all of a sudden look more comfortable. He didn’t need any medications, and that’s when we knew that’s what he needs, he doesn’t need more," Henner said.

Dr. Henner said she discussed potential issues with his parents, like when it made sense to go to the NICU.

“We didn’t know if we had minutes, hours, days, weeks. Instead of doing the NICU with artificial means to keep him alive and then maybe having to decide to take him off that, for us personally we didn’t want to put him through that,” Keara Burke said.

After three days in the hospital, baby Rory came home, where a perinatal hospice nurse made regular visits, and helped the girls make special keepsakes to remind them of their little brother.

“She did a bunch of art projects with the girls and the little feet prints …” Keara  said.

And the palliative care team prepared the Burkes for the baby’s final hours.

“He died on Fathers Day, so I got to spend one Fathers Day with him at least,” Rory said.

“He was held for five days straight. He was never put down,” Keara said. “He passed away very peacefully in my arms on the couch, and he left this world to the next world, and it was very, very beautiful."

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