On Christmas Eve 2013, Zitlaly knew her life was about to change forever. She was in labor with her first child—a child doctors had told her would not survive past birth. When her contractions began, she went to her room, closed the door and silently cried.
“I grabbed my tummy and I said, ‘God, she’s yours. Whatever is going to happen is in your hands. If it’s within your will, please allow me to keep her. But only if she’s going to live a quality of life where she’s not suffering. And when she is born, I will do the best I can.’”
Zitlaly prayed for a miracle—and that’s what she got.
A rare diagnosis
When Zitlaly found out she was pregnant at 19, she felt afraid. She longed for a family of her own, but like many young people, she wanted to build her career first. “I always say my baby was planned. She just came ahead of time by five years,” says Zitlaly.
But as Zitlaly’s baby bump grew, so did her excitement. She began visualizing life with a child and ways to adapt her dreams.
- “I was wanting my baby. I was looking forward to kissing her and smelling her baby scent.”Zitlaly
Two weeks before her due date, Zitlaly headed to the doctor because she was experiencing headaches and dizziness. After an ultrasound, a medical team explained to Zitlaly that her little girl had campomelic dysplasia, an extremely rare genetic condition. Zitlaly’s doctor told her there were only six children in the world known to have the condition, and every one of them was on life support.
“We were told that the probabilities of her living were none,” Zitlaly says. “That day was the most heartbreaking. I was wanting my baby. I was looking forward to kissing her and smelling her baby scent. And then, suddenly, I was told to start grieving my unborn child.”
Campomelic dysplasia affects the development of the skeletal and reproductive systems—abnormalities can include a small rib cage, dislocated joints and an underdeveloped jaw. But the greatest challenge for babies with this condition is breathing.
“Babies with campomelic dysplasia are born with a rib cage so tiny and compact that it doesn’t allow the lungs to expand. So they can suffocate trying to take in that first breath of air,” Zitlaly explains. Although each baby’s symptoms and lifespan vary, most children die at birth or within the first year of life due to breathing problems.
Zitlaly battled conflicting feelings about what to do. She resolved that she would let the baby and life decide—she was going to do everything she could to bring her baby into the world, but she was not going to put her child on life support after birth.
On Christmas Day, Zitlaly’s mother was with her in the hospital room.
Zitlaly’s doctor came up to the bedside table, leaned on it calmly, and said, “Hey, how are you doing?”
At this point, Zitlaly was enduring intense contractions. She jokingly replied, “I’m great, how about yourself?”
The doctor said, “Listen, I know there’s a lot of things going on right now. We have an awesome team here to help you out. But I have an important question for you: How far do you want us to push to save your daughter’s life?”
Zitlaly looked him straight in the eye and said, “Do everything you can for her.” In that moment, she knew she made the right decision. “I felt it,” Zitlaly says.
The doctor said, “If you want to push for five minutes or five hours, it’s up to you. But this little girl needs to get out. The more you help her, the less she will struggle. Go.”
Linda Amadamia was born in 15 minutes. Her name means my beautiful beloved. She was named after her grandmothers, Irma Linda and Amada. “I added ‘mia’ on the end because she’s mine. She’s my beloved,” says Zitlaly.
The doctor placed Linda on Zitlaly’s stomach for mere seconds. Linda’s father cut the umbilical cord, and nurses whisked her away to another room. And then Zitlaly listened for the cry—the cry that would mean Linda had taken more than one breath.
“I looked at the ceiling trying to listen. I was pushing out the placenta but all I could focus on was straining to hear her. I couldn’t hear her. And then, I heard a whisper of a cry. I thought, ‘Oh my God. She made it.’”
A little while later, they brought Linda back into Zitlaly’s room. She was in an incubator, lying with her hands tucked under her chin. “She looked like one of those porcelain angels. I reached over and touched the glass, and I said, ‘Linda, you stay good and I’ll see you in a little bit.’”
Linda’s challenges and Zitlaly’s transformation
Linda was transported to the Newborn Intensive Care Unit, or NICU, right away. On the second day, Zitlaly held Linda for the first time. Baby Linda was connected to many devices—a pulse oximeter, a feeding bag, an IV pump. “The nurses laid her on my chest and positioned all the wires out of the way. In that moment I knew everything was right. It felt natural. I felt at peace, like everything was going to be okay.”
Two months later, Linda was met by the warm embrace of family when she went home. Paintings created by her Aunt Reyna and Uncle Christopher hung on either side of her crib. One read, “Welcome Home”; the other read, “Ohana means family. Family means nobody gets left behind or forgotten.”
Even though Linda moved home, she practically lived in the hospital. A nurse came over every morning to check on her. She visited the hospital each day for a series of medical appointments that often lasted from seven in the morning until five at night. “It was really overwhelming,” Zitlaly says. Gradually, daily appointments turned into weekly ones as Linda grew stronger.
- “I realized as long as I’m with her, everything is going to be fine.”Zitlaly
Then, when she was 3 months old, Linda suddenly stopped breathing.
Zitlaly was driving and Linda was in the back seat. Linda turned pale and began gasping for air “like a fish out of water.” They pulled into the Chuck E. Cheese parking lot, and Zitlaly ripped Linda out of her car seat and laid her on the concrete. She saw Linda’s eyes roll back and felt her arms go limp.
A woman nearby called for help while another outstretched her arm in prayer. A cop spoke into his radio: “Mom’s performing CPR, but I don’t have a pulse.” When Zitlaly heard his words, she pleaded, “Linda, don’t leave me.” Her stern inner voice told her to keep counting.
Finally, Linda took a breath. “When you’re blowing a balloon, there’s a point when it expands and you can hear a whoosh of air. When she took that breath, it was the same sound,” says Zitlaly. “Afterwards, I cried for days because I’d essentially seen my child dead. Later on, I thought, ‘I kept her alive.’ I realized as long as I’m with her, everything is going to be fine.”
When Linda turned 1, her family threw a party. They dressed up and danced. At the time, Linda only had limited movement in her upper body. Family members and friends passed Linda around the room as she stretched out her arms like a bird. “That was her version of dancing,” Zitlaly says. “I remember smiling and thinking, ‘I don’t think there’s ever been a 1-year-old who’s enjoyed the dance floor the way my child does.’ You could tell she was having the time of her life.”
Zitlaly describes the first year of Linda’s life as difficult, but she also recognizes that her circumstances brought forth a new level of confidence in herself. She conquered fears. She soaked in a variety of medical knowledge, which sparked her pursuit of a career in the healthcare field. She learned how to take care of Linda. She kept her child alive and well.
“The first year was the most challenging. The most stressful. The scariest. But after that first year, I said, ‘We got this, Linda.’ It was a learning experience. I know she changed me within that first year,” Zitlaly says.
A day in the life of Linda Amadamia
Linda received infant care until she was 3. After 3, she started holding her head up a little more. At age 4, she was able to roll over. The doctors told Zitlaly, “She’s not going to be able to do much else.” In August 2021, Linda defied the odds again and began crawling.
Today, Linda Amadamia is 8 years old. Here’s a peek inside her life.
Linda begins her day with a couple of medications. Zitlaly communicates with Linda’s palliative care team at Phoenix Children’s regularly, and they often give her permission to administer meds at home. Some mornings, Linda will have virtual speech therapy. Linda is trilingual—she knows Spanish, English and American Sign Language. Recently she’s taken up French!
Linda spends most of her time lying down because a resting position works best for her air flow. When she sits up, her oxygen levels begin to drop. This is because of her scoliosis—the curve in her spine restricts her lungs.
Zitlaly gives Linda massages twice a day to prevent the formation of bed sores. She changes her position often, and she makes sure to lay Linda down on soft surfaces.
On the days Zitlaly is at work, Linda stays at home with her nurse. She spends her time playing board games, coloring and attending virtual classes. Linda loves playing practical jokes on the people she is closest to. When she strikes up a game of Sequence with Zitlaly, she’ll mischievously draw several cards at once.
Several of Linda’s joints from her waist down are dislocated—even in some of her toes. Her spinal vertebrae from C2 to C5 are malformed. “Her spine looks like a zigzag,” Zitlaly says. “I’ve brought her to several neurosurgeons, and they all don’t understand how Linda has mobility from the neck down. She’s going beyond what she should be able to do.”
“Linda is wheelchair bound. But man, you should see her maneuver that chair,” Zitlaly says. “She enjoys popping wheelies on it. She looks at fast cars—her favorites are Ferraris and Corvettes—and she goes, ‘Vroom-vroom.’”
Zitlaly wipes Linda’s mouth after she eats a strawberry. Linda enjoys foods of all types, but she tends to eat very small portions. Zitlaly supplements her meals with tube feedings and checks her blood sugar levels after meals.
Zitlaly and Linda hit their living room dance floor. Ever since she was a baby, Linda’s favorite thing to do has been dance. She loves a variety of music—from Macklemore to Aretha Franklin.
Wise. Patient. Silly. These are just a few of the words Zitlaly uses to describe Linda’s personality. “I have a little best friend. She’s always eager to go on adventures with me. It doesn’t matter where we’re going. As long as she and I are together, she’s happy.”
A life worth celebrating
Linda has had, and will continue to have, a beautiful life. Doctors have stopped telling Zitlaly what to expect because Linda does the opposite of what is medically possible. Instead, five specialists at Phoenix Children’s work together to support the mother-daughter team in every way. “They give Linda the best,” Zitlaly says.
Zitlaly’s favorite part of the day with Linda is the end. They snuggle into bed and celebrate the ordinary moments of the day. Linda enjoys something as simple as going to the grocery store and she’ll say afterwards, “I had so much fun with you, Mommy.”
“Life is about my time with her and how I get to enjoy her,” Zitlaly says. “She teaches me how to be present. At one point, I couldn’t imagine my life with her. But now, I can’t imagine my life without her. And that’s the most amazing and scariest thing of all. I know I’m Linda’s mother, so maybe this is a little biased—but to me, to know Linda is to fall in love with her. She’s joy. She’s life.”
Since 2009, Phoenix Children’s Palliative Care program has provided specialized medical care for nearly 2,000 children with serious conditions. When children like Linda have access to our palliative care team, we can ensure quality of life for everyone on the journey.