When Nye Peterson was 10 weeks pregnant with her second child, Zoe, she took a blood test because she was considered at "advanced maternal age." The test came back positive for a chromosomal disorder. Another test confirmed that her daughter had Trisomy 18, which happens when there is a third copy of chromosome 18 instead of just two of that chromosome.
Doctors recommended that she terminate the pregnancy because of the risk of the baby dying at birth or shortly after.
Peterson found a support group for parents who had lost children with Trisomy 18 and learned that there were children who survived. One of the moms suggested that Peterson take a tour of the neonatal intensive care unit at her hospital and talk to her obstetrician about her wishes.
During that tour, she learned about the Special Deliveries program at St. David's Women's Center of Texas at St. David's North Austin Medical Center. The program connects parents who are expecting and have a high-risk pregnancy to a nurse who will help them advocate for their baby. It's a free program for the families.
Peterson was connected with Cheryl Kifer, the perinatal nurse navigator at St. David's Children's Hospital.
Kifer says the parents she works with "have lots and lots of concerns. I walk alongside from the time they are diagnosed through pregnancy and even afterward."
Kifer and her families create an individualized care plan, and she teaches the parents how to advocate for their children's medical care.
The program started in 2014. Kifer describes her work as building a bridge between the hospital and doctors and the parents and patients. It's about lowering stress and providing the right information so families can make decisions.
Often, mothers are referred to the program through their doctors. They could be mothers of multiples or mothers having babies with chromosome anomalies or genetic problems such as a heart defect. Or it could be that it's a high-risk pregnancy because of mom's health.
"During the time when the mom is anticipating the baby, she is so filled with questions and hope and fears and worries," Kifer says. "What I do is be a resource for her to sort out some of the things we have answers for and then focus on what we don't have an answer for."
Once the mom is at the hospital, Special Deliveries helps make sure her care is coordinated as well as the baby's care.
Typically, Special Deliveries has 30 to 35 families in the program at one time. "The goal is to have a consistent, caring point of contact," Kifer says. There are other nurses trained to help, but consistency is important.
"It was such a wonderful experience," Peterson says. "(Kifer) was the first person who gave me hope."
Together they created a plan for how to handle this pregnancy and the birth. "It wasn't, 'I am so sorry'; it was, 'OK, this is what we will do.'"
Even with a plan in place, the day came for delivery and Peterson says she was "a nervous wreck." She had a panic attack. "I was looking at my stomach and thinking, 'Is this the last time my daughter will be safe?'"
She remembers being in the delivery room and praying for a cry coming from her daughter. It felt like forever, but Zoe did cry. "I started crying," Peterson remembers. "I was so grateful to God that my baby came out breathing on her own."
Doctors were commenting about how well Zoe was doing. "We were expecting the worst," Peterson says.
Nurses brought Zoe up to Peterson for her to see. "I was able to tell her how proud I was of her for fighting and as long as she was able to fight, I would fight with her."
They took Zoe to the NICU and gave her some oxygen to help her breathe. Zoe was able to go home 10 days later, and again Kifer helped the family negotiate an earlier release for Zoe to see if she would thrive better at home even though she was still on oxygen.
Peterson's connection to Kifer meant that she had someone who was checking in on her throughout their stay in the NICU as well as someone she could text with questions.
"It was huge," Peterson says. "I really felt like I had an advocate that knew what I would want as a mother and a woman of faith. Regardless of what some of our doctors would say, she believed there was hope."
Peterson says that Kifer would encourage her: "If that's what you want, go ahead and speak up."
Today, Zoe is 3. By 8 months, she was eating food rather than using a feeding tube. They are doing speech therapy and sign language. She attends school. She smiles. "She lives a great life," Peterson says.
"The biggest piece of it was just the hope that you are given," Peterson says. "Your child's story will be your own."
Without Kifer talking Peterson through the options, she might not have known there were options and just held Zoe until she died rather than intervene with oxygen and a feeding tube.
Kifer says they try to see the baby beyond the diagnosis and focus on what the baby needs.
In her almost 40 years as a nurse, she says this has been "a dream come true."
"I'm able to take all the knowledge, all the expertise, as well as relationships with nurses, doctors and specialists and really bring this to the family and help them at a time that can be extremely stressful."
As the program has grown, so has the medical care. "Every single day, we continue to learn from families ... every single situation is different than the rest; every day it evolves a little bit," Kifer says.
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