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New Arizona abortion law complicates fetal-defect cases

New limits put on abortions


House Bill 2036 forbids doctors from aborting most fetuses with a gestational age of 20 weeks or older, even in situations where the doctor discovers the fetus has a fatal defect. The law also defines gestational age as beginning on the first day of the woman's last period, meaning abortions are actually banned starting at 18 weeks of pregnancy -- typically about the same time a doctor would perform ultrasounds where most abnormalities are detected.


According to state records, women in Arizona terminate about 100 pregnancies a year after 20 weeks, but it's unclear how many of those are because of a problem with the pregnancy.

The new law requires doctors to offer information about perinatal hospice services to women considering abortion at any stage of their pregnancy because of a fatal fetal abnormality. It also requires the state to maintain a website list of organizations that provide services.

The two organizations that offer such help, MISS Foundation and Embrace, provide counseling and comfort, help develop birth plans, attend births, organize meals, create mementos, make funeral arrangements and prepare families for every outcome.

The Legislature provided no funding for such services, and volunteers for the two groups, while thrilled the state and doctors will spread the word about the service, worry they'll be overwhelmed when the law takes effect.

In other states with similar abortion restrictions, most of the programs for families continuing with a difficult pregnancy are hospital- or hospice-based. They also often don't provide services as broad as the Arizona organizations do, such as services that extend to the entire family and continue after delivery.

The Arizona organizations scrape by with private donations and volunteer help. Unlike similar pediatric programs for sick children or hospice services, before-birth programs are a relatively new idea and not billable to insurance companies. Participating families aren't asked to pay for help.

"This law may have intended to do good, but it can really adversely affect non-profit organizations that desperately want to help people but maybe can't help the number of people who now come to us," MISS Foundation founder and CEO Joanne Cacciatore said. "We are already stretched very, very thin. I don't know where this money would come from."

Cacciatore said one or two families a month facing a pregnancy with a fatal prognosis contact MISS Foundation.

"They're finding us on their own," she said. "I don't know what will happen when the Legislature opens this up."

Berdette Carrasco, Dana Southworth, Christina Portillo and Dani Baxter run Embrace while juggling full-time jobs and caring for their own families. They do what they do because they have expertise in obstetrics and therapy, and are compelled to help others. Carrasco and Southworth have gone through the loss of one of their own children because of a fetal anomaly.

"The natural order is that grandparents die," Southworth said. "It's not children dying before parents. It shatters our order."

Carrasco said she doesn't know how many new families the new law may bring to them, but they are trying to prepare for everyone who may need their help.

"There will be people now having to continue a pregnancy without an option (in Arizona)," she said. "We want to support these families."

Getting help

Julia Gonzales still had an option when she learned earlier this year that there was something very wrong with her baby. Her daughter Carmen is due any day now, but she likely won't live long enough to take her first breath.

Eighteen weeks into the pregnancy, doctors diagnosed Carmen with anencephaly, a neural-tube defect in which babies develop without most of their brain or skull.

As a devout Catholic, Gonzales, 30, refused to consider abortion.

"I didn't even have the idea in my mind to stop the pregnancy," she said. "And then two weeks after they told us, we saw her. She was a girl. But we never expected it would be this bad. Sometimes I wonder why I didn't stop the pregnancy."

Gonzales is an example of what an unknown number of Arizona women will be required to face under HB 2036. But she's also getting the kind of help that will be more accessible under the new law.

Gonzales struggles to speak through her tears when she thinks about what will happen when Carmen is born. But she is determined to spend every moment she can with her daughter. She's getting through each day largely with the help of the women who run Embrace.

Resource for families

Embrace has about 20 clients. The Gonzales family and one other are awaiting the births of their children. Some of the other families are grieving the death of their child while others are learning how to care for and celebrate children with various health challenges.

"Bereavement is a piece of what we do, but not everything," Carrasco said. "A lot of babies with congenital anomalies will survive. We are meeting needs of the family that are not just medical, but are also emotional."

She said their goal is to give families a single resource to help coordinate every need they may have. When Embrace workers first meet with a family, they provide them with accurate medical information about their child's diagnosis and connect them with other families who faced similar diagnoses.

"Obstetricians tend to not have enough time to educate," Portillo said. "Sometimes we are the first person to really explain something."

They prepare the family physically and emotionally for what to expect when their child is born.

Carrasco said she doesn't expect that to change much when more families seek help because they have no choice in continuing with the pregnancy.

"We have dealt with a couple of families that, because of late diagnosis or a lack of prenatal care, they didn't have a choice," she said. "I don't feel that there was a difference between the people choosing and those who did not by the time they get to this place in their pregnancy."

She said the fear, sadness and stress are the same.

"These families are hurting," Carrasco said. "As the delivery happens, regardless of the outcome, the level of stress is significant. There is a dramatic difference in a family not having anyone to help and them having an organization that knows what they're going through."

The Embrace workers go to doctor appointments with the families and help translate medical jargon that can become overwhelming. They meet in advance with the delivery staff to ensure everyone understands what the family wants the delivery to be like, and are there to help during labor and delivery.

"We do everything we can to give this child the best quality of life, even if it's just one second of life," Carrasco said.

Moving away from guilt

Gonzales, her husband, Joaquin, and 4-year-old twins Christian and John Carlos have met with the Embrace women half a dozen times. Gonzales' doctor told her about them when she was diagnosed, but she never called. Her doctor called Embrace and asked them to help.

"If that doctor hadn't called Berdette (Carrasco), I wouldn't have been able to make it this far," Gonzales said.

Before they got involved, Gonzales and her husband struggled to talk to each other about the baby, and her extended family refused to acknowledge the situation. Now the adults are starting to talk to the twins about how sick their baby sister Carmen is and how she will die.

"At the beginning, I was fighting with God every day," Gonzales said. "When I started talking with Berdette and Dana, they showed me God had a purpose. Thanks to them, it's been easier going through this."

Southworth pushes them to move away from guilt, from asking why and instead focusing on their love for Carmen.

"Love her where she's at. What are places you would want to take her? Go there now before she's born and make memories," she tells them.

Gonzales is trying, but she's not there yet. "How do you enjoy it when you know your daughter's going to die?" she sobbed. "I know I have to enjoy every move she makes inside me, but I can't. I'm trying to find a reason God gave us this baby."

Prepared no matter what

Not every family Embrace works with has a sad ending. Mike and Kelly Ely learned 18 weeks into their pregnancy that their son Preston had DiGeorge syndrome. The chromosomal disorder has a wide range of outcomes, most of which aren't known until the baby is born. Preston could have been born blind and deaf, with learning disabilities, deformed features or heart defects. He also could have died at birth.

"Embrace was a huge support system," Kelly Ely said. "They made us feel so much more comfortable going forward with the pregnancy."

She said Embrace workers explained what they could expect and helped the couple cope emotionally.

The Embrace workers also helped the couple communicate with each other and assured them it was OK to be excited about the pregnancy.

Preston was born with heart defects and had surgery at a week old. He has club feet, which can be corrected. Now 5 months old, he's a beautiful, bright-eyed, happy baby. "He's a little miracle," Kelly Ely said.

Support through it all

Together the Gonzales family and Embrace staff have written out a birth plan giving instructions to the hospital staff. Gonzales is terrified of what Carmen will look like, and at the same time feels guilty that fear makes her a bad mother.

"I'm so scared about seeing her," she said. "When I remember her, I don't want to remember her looking like that. I'm so worried I won't be a good mom for her."

When she's born -- no matter how long she lives -- Julia and Joaquin will bathe Carmen, dress her in a gown and have a priest baptize her. A professional photographer will capture the only family photos they'll ever take with her. They'll take as long as they need to say goodbye.

"This is their last chance to parent their child," Southworth said.

The women of Embrace have prepared the Gonzales family as best they can. But nothing can prepare parents to watch their child die at birth. And nothing can dissuade them from holding out hope for the impossible.

"We're expecting a miracle," Gonzales said. "When you hear her heart, it's hard to believe she's not strong."

So in the end, when there is no miracle, the women of Embrace will offer the most important thing they have -- they'll be there.

"We can't fix this, but we can let them know how much we care," Southworth said.

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abortion Michael Chow/The Arizona Republic

Dana Southworth (right) counsels Joaquin and Julia Gonzales on their baby, Carmen, who is not expected to survive after birth.

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