Hospice doula becomes 'angel' amid loss

TAMPA

For Lisa Brown, the moment of finding out that her unborn baby had a cyst on his brain was an indescribable feeling. "It's the most devastating moment of your life," said Brown, a Tampa chiropractor.

She and her husband, Mike, had gone to their obstetrician's office three years ago for a basic ultrasound at 10 1/2 weeks because of a previous miscarriage. They wanted to make sure the baby had a heartbeat.

The ultrasound technician stared intently at her screen. There was silence. "Oh, my gosh," Brown thought.

Finally, the tech revealed that she had some concerns and then quickly brought in the doctor. The grainy black and white images revealed that their baby had cystic hygroma, a cyst on the brain.

It was ominous news, Brown said. What does it mean? What caused it?

In time, they would learn that there are a number of genetic disorders: Trisomy 21, for example, is Down syndrome. Trisomy 18, also called Edwards syndrome, is what their baby had. The condition is fatal.

The ultrasound tech offered no assuring words, no suggestions. The Browns felt their world turn upside-down.

"It's no different than a policeman calling to say your son has been in a life-threatening accident," Lisa Brown said.

She was transferred to a high-risk obstetrical practice. There, she got an amniocentesis, underwent other tests, and spoke to a genetic specialist who referred the family to Jane Parker.

"It was weeks of what I call pure hell," Brown said, "until we found Jane."

'God sent her to us'

Jane Parker's face is gentle and round, her voice calm and soothing.

As a volunteer doula with Suncoast Hospice, she attends births where the babies are expected to be stillborn or to die quickly. For Parker, helping families throughout this time of devastation is a calling.

"I like to call it 'being with,' " she said.

Parker, Debi Lanning and Karen Jackson, part of hospice's lesser-known perinatal bereavement program, have helped more than 450 families in the Tampa Bay area since the program began five years ago. Most of the deliveries are at Bayfront Medical Center, along with St. Petersburg General Hospital and Mease Countryside.

"It's the best job I wish I never had to do," Parker said.

She gives families her cell and home phone numbers and makes herself available for support before, during and after the birth.

Ultrasounds can be a time of excitement. Parents get to hear their developing baby's heart beating and, further in the pregnancy, to see their tiny in-utero hands, feet and profiles. For many, their biggest concern is whether the baby is a boy or a girl. They forget that the primary reason for ultrasounds is to monitor development. And when something's wrong, they are left to make difficult decisions, including whether to continue the pregnancy.

Some doctors perform terminations up to 24 weeks in Florida when the abnormalities are "not compatible with life."

Parker, who lives in Pinellas County, went to Brown's home in Tampa's Ballast Point neighborhood with books for the family and for son Sam, who was 3 at the time.

"She was compassionate, preparing us for losing the baby," Brown said. "She was there if I wanted to cry or if I had a question.

"God sent her to us, she was our angel."

A lifetime of memories

Brown's Catholic background caused her not to terminate the pregnancy. But it's a personal decision, she said, and what's right for one person may not be right for everyone.

"Someone validated it for us," she said of Parker. "As parents, we were just doing the best we possibly could."

The months that followed were tough for Brown as she carried a baby that doctors said would soon die. Sometimes she would put on a fake smile to avoid an uncomfortable situation. Inside, there was an ache, an anger. Why this baby? Why me?

At 31 weeks, she went into labor and immediately called Parker, who met the Browns at Bayfront Medical Center in St. Petersburg. Parker focused on Brown as a doula does when a woman is in labor. She helped calm her, encouraged her to breathe, gave her ChapStick for her dry lips, brought her ice chips, talked her through the pain and the pushing.

"She was such a source of tranquility in one of the most horrible situations," said Brown, who delivered her child without any pain medication.

They named him Nevan, Irish for "holy little saint."

Parker commented on how beautiful he was and encouraged the family to take photos.

"I was excited because I was in the moment," Brown said. "That was all I could hold on to."

Parker bathed Nevan and dressed him, did footprints and pictures, helped locate the priest so that he could be baptized. "We created a lifetime of memories in that short amount of time."

Then, within about an hour, he passed away.

Lisa and Mike Brown kept him with them all night. The next morning, Parker walked little Nevan to the hospital morgue.

She never retired

Before coming to the Tampa Bay area, Parker was a high-risk labor and delivery nurse in Chicago for years and often saw babies die. She wrote policies and procedures for loss, and went to Hospice in Chicago to start a support program. She and her husband moved here to retire, she says with a laugh. "Nurses never retire."

"One of many reasons I'm so proud of this program is we provide an opportunity to honor this experience that the mother is going though," said Stacy Orloff, vice president of palliative care and community programs with Suncoast Hospice. "They can honor the life, no matter how short it is. We're helping families say hello and goodbye at the same."

Brown went on to have another baby. Finn is now 11/2. She delivered him at the same hospital, but the hospital made sure it wasn't the same room.

Again, Parker was with the family. "To be with us at the saddest moment and then one of the happiest moments …," Brown said, "she could be there with us full circle."