For Lisa Brown, the moment of finding out during an ultrasound that her unborn baby had a cyst on his brain was an indescribable feeling of loss.
"It's the most devastating moment of your life," said Brown, a chiropractor in Tampa.
She and her husband, Mike, went to their obstetrician's office for an ultrasound at 101/2 weeks in the pregnancy, three years ago, because of a previous miscarriage. They wanted to make sure there was a heartbeat.
The ultrasound technician stared intently at her screen. "During the ultrasound there was silence, and I thought, 'Oh my gosh,'" Brown said.
Finally, the tech revealed she had some concerns. The doctor was brought in, and they got the news.
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?
There were a number of genetic disorder possibilities: Trisomy 21, for example, is Down syndrome. Trisomy 18, or Edward's syndrome, is fatal.
The ultrasound tech offered no assuring words. The Browns, sitting in the tiny, darkened room, felt their world turn upside down.
Of the ultrasound techs and doctors who have to deliver news to parents, Brown said, "They have to remember that they may have done 40 ultrasounds that day, but each one represents a life."
Brown was transferred to a high-risk obstetrical practice. She sat in the waiting room surrounded by other pregnant women, unsure of what would come next.
She got an amniocentesis, underwent other tests and spoke to a genetic specialist, who Brown said didn't offer real support - other than referring them to Jane Parker.
"It was weeks of what I call pure hell until we found Jane," Brown said. "God sent her to us. She was our angel."
Parker's face is gentle and round, her voice calm and soothing. For the families she helps, her presence often is a blessing amidconfusion.
As a volunteer doula with Suncoast Hospice, Parker attends births where it's known the baby will be stillborn or die soon after birth.
For Parker, helping families throughout this time of devastation - during pregnancy, the delivery, and afterward - is a calling.
"I like to call it 'being with,'" she said.
Ultrasounds are usually a time of excitement. Parents get to see and hear their developing baby's heart beating and, at later ultrasounds, see pictures of tiny in utero hands, feet and profiles. For most families, the biggest concern can be whether to find out if the baby is a boy or a girl. Many parents forget that the real reason for ultrasounds is to make sure the baby is developing normally.
Parker, who lives in Pinellas County, went to the Browns' house in Tampa with books for them and for their then 3-year-old son, Sam.
"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."
Parker, along with Debi Lanning and Karen Jackson, part of the hospice's perinatal bereavement program, have helped more than 450 families in the Tampa Bay area, like the Browns, 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 Hospital.
"It's the best job I wish I never had to do," Parker said.
Parker gives families her cell and home phone numbers, and makes sure to be available before, during and after the birth. Often the families have big decisions to make, including whether to continue the pregnancy, and Parker is there to offer support.
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Brown's Catholic background was a deciding factor in not terminating the pregnancy early. But she says it's a personal decision, and what's right for one person may not be right for everyone else. In fact, most people facing a life-pending anomaly do terminate their pregnancies. Many doctors encourage it.
"Someone validated it for us," she said of Parker. "As parents, we were just doing the best we possibly could."
There are no words to describe what it feels like to carry a baby that you know will die. It's an abstract concept, images on a screen, sounds of the heartbeat. Confusion mixed with deep sadness.
At 31 weeks, Lisa went into labor. She immediately called Parker, who met them on the labor and delivery floor at Bayfront Medical Center.
Parker focused on Brown as a doula does when a woman is in labor. She helped calm her, encouraged her to breathe, gave her balm 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. I said I can't think of what's going to happen later, I need to focus on having this baby," Brown said.
She delivered baby Nevan naturally, without any pain medication. He lived for about an hour. Parker commented on his beauty, encouraged photos be taken and was joyful and positive.
"I was excited because I was in the moment," Brown said. "That was all I could hold onto. In that hour a lot transpired and she helped us do that. We created a lifetime of memories in that short amount of time."
Parker bathed the baby and dressed him, took footprints and pictures and helped locate a priest so the baby could be baptized.
The Browns kept Nevan, meaning "holy little saint" in Irish, with them all night. The next morning, Parker walked the baby to the hospital morgue.
"I felt like I had left an arm and a leg at the hospital," Brown said. She was in a fog for months.
Parker regularly made phone calls to check on her. First daily, then weekly. She remembers the anniversary of his death.
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."
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Suncoast Hospice also offers a counseling program for before and after birth.
"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 time."
Parker has a rapport at Bayfront, and the nurses and doctors on the labor and delivery floor know and respect her.
"They look up to her and admire her," Brown said. "She helps the nurses do their job."
Rabbinical Chaplain Kate Fagan works full time at Bayfront Medical Center, and said doulas like Parker are able to spend much more time with the families than she can as a hospital chaplain. She added that Parker was the driving force behind this program.
"She has the biggest heart of anybody that I know," Fagan said. "She gives of herself so freely and completely to people who are in a huge amount of pain and may have felt they had little support or understanding. She is a fantastic doula and is willing to be on call and come 24/7 to help women who are losing a child, and I find that to be a time when the devastation can be overwhelming.
"They have worked hard to set up a program that functions fabulously well," Fagan said.
Fagan pauses, adding, "I see her connection to God, by whatever name we might want to call it. Things come through her that become gifts for the people she works with."
Brown said Parker "was there on all fronts. She was there as a doula. She was there as a perinatal hospice advocate.
"I just can't believe this woman," she said. "I don't know what we would have done without her. She helped us validate our son's life. I could cry just thinking about her at any given time."
Brown went on to have another baby a year and a half ago. She delivered at the same hospital, but they made sure it wasn't the same room. Parker was with them again.
"To be with us at the saddest moment and then one of the happiest moments ... she could be there with us full circle."
A doula is a trained birth companion who:
- Assists the woman and her partner in preparing for and carrying out their plans for the birth.
- Stays by the side of the woman throughout the entire labor.
- Provides emotional support, physical comfort measures, an objective viewpoint and assistance to the woman in getting the information she needs to make informed decisions.
- Facilitates communication between the laboring woman, her partner and clinical care providers.
- Nurtures and protects the woman's memory of her birth experience.