‘A little glimpse of hope’: The powerful stories of three Trisomy families

When doctors tell parents their baby has — or is likely to have — a Trisomy condition, it’s a difficult and life-changing moment. For some, it’s the beginning of their heartbreak of losing their child. For others, it’s a hard moment but it’s followed by the joy of their child overcoming the limits that have been put on their lives.

Three moms shared the stories of their children’s diagnoses and what they want other parents to know.

Ethan, Trisomy 9

Kristin Hernandez and her husband were ready to start a family, but getting pregnant proved harder than they anticipated. After more than a year, they were advised to seek help from a fertility specialist, but miraculously, before they even made the phone call, they learned they were pregnant.

At their 20-week ultrasound, they were excited to find out they were having a boy. But that appointment also showed multiple markers for what doctors said was like a Trisomy condition. They were concerned about how the baby boy’s heart and brain had developed, but he had a strong heartbeat. The couple didn’t want to take the risk of miscarriage so they declined an amniocentesis.

Yet, even with no official diagnosis, doctors advised an abortion multiple times.

“It was never an option,” Kristin told Live Action News. “They would ask, ‘Are you prepared to have a baby with really hard needs?’ My answer would be that no, I’m not prepared. But I’m not prepared just like the mom whose child gets diagnosed with cancer is not prepared for that. We’re not prepared for things like that. No one is really prepared for that to happen to their family.”

They didn’t know what the future would look like, but Kristin and her husband knew that this was their son and that they loved him and were going to cherish the time they were given with him.

Baby Ethan was born by emergency C-section on August 16, 2015, and though doctors worked for 30 minutes, Ethan did not respond to any efforts to stabilize him. He lived for 93 minutes outside the womb, held and loved by his parents. Cord blood testing showed that Ethan had full Trisomy 9, which is extremely rare. Doctors were amazed that he had even made it through the first trimester, and to be born alive was nearly unheard of, Kristin explained. Getting to meet him while he was alive was a miracle. The couple later suffered multiple miscarriages before welcoming their son Andrew.

As difficult as it was to lose Ethan, Kristin has no regrets. And she wants people to understand that she would do it all over again.  “It was very difficult but as soon as I held him and looked at him… yes, in the eyes of the medical team there were so many imperfections, but as a mom, you just see your baby. Dark hair like your husband, your nose, the same color eyes,” she said. “You see the resemblances and just how precious he was. Anomalies and all — just so perfect and precious. I’m so grateful I can look at my pregnancy and I have no regrets.”

Aaliyah, Trisomy 13

Rebecca Amaya was excited to be expecting her fourth baby, and her pregnancy went smoothly. There was no indication that her baby girl had any medical concerns whatsoever. But then when Baby Aaliyah was born, doctors whisked her away.

“I didn’t get to see her,” Rebecca told Live Action News. “The doctor checked her and he told me, ‘I have bad news. Your daughter could have Trisomy 13 or 18.’ He was describing her as she had clenched hands, small eyes, her ears are small. He was being very negative. He gave her four days to live if we were lucky. I had never heard of Trisomy 13 or anything he was talking about. It was very heartbreaking. My heart sank; her dad was crying.”

Rebecca didn’t know what to think about what her baby girl would look like, but, she said, “I finally saw her and she was nothing like he was describing her. The doctor was very wrong.”

Aaliyah was officially diagnosed with Trisomy 13, also called Patau syndrome. She was born with two holes in her heart and an omphalocele, in which the intestines or other organs stick outside of the body through the belly button. She had surgery to correct the omphalocele at two days old and, despite the doctor’s initial predictions, she spent 30 days in the neonatal intensive care unit and then was sent home with her family.

Since then, one of the holes in her heart has closed on its own and her parents are hopeful the second one will as well. She has a feeding tube, but hasn’t used it because she “loves to eat.” She’s also had successful surgeries on her eyes for cataracts and glaucoma.

Today, Aaliyah is a very healthy three-year-old who is called a “miracle baby” by her doctors. She attends physical therapy, occupational therapy, and speech therapy. She walks (and runs) with a gait trainer and is able to say a few words including Mom and Dad. She understands both English and Spanish and uses an Eyegaze device — a tablet that allows her to communicate words using her eyes.

“I would tell other parents (getting a Trisomy diagnosis) to have faith and to be patient,” said Rebeccca. “The doctors were very wrong about Aaliyah. They gave her no chance, had no faith in her. But these children can thrive with a lot of love and patience.”

Rylee, Mosaic Trisomy 18

When Julie Howerton was pregnant with her sixth child, doctors advised her to have an amniocentesis because bloodwork showed a one in 16 chance that her baby girl had a chromosomal abnormality. Julie was about five months pregnant when doctors told her that baby Rylee likely had Trisomy 18.

Though they offered little information, they told her that her daughter would not walk or talk. They said she’d have no quality of life and that she would cause Julie and her husband to get a divorce. Doctors suggested Rylee would be an embarrassment to her siblings as well as a financial burden — if she even survived.

Without even looking at an ultrasound, doctors suggested an abortion, which Julie and her husband refused.

“My water broke five weeks early,” Julie told Live Action News. “I was scared. I thought they would hand me a monster based on the way they described her. She wasn’t breathing when she was born and medical journals say, ‘Don’t revive,’ but luckily it took them 90 seconds to revive her.”

Baby Rylee looked “fine and healthy.” She was later diagnosed with mosaic Trisomy 18, and doctors gave her just a five percent chance of surviving until her first birthday. Her family anxiously watched every sneeze thinking that this was going to be the end, and that Rylee would not survive.

But Rylee surprised everyone.

As she grew, she faced setbacks including selective mutism, aggression, and behavioral issues. Eventually, she was also diagnosed with autism and Duplication 9p, which causes delayed motor and cognitive development, among other symptoms. Rylee worked hard to overcome the challenges she faced and today, she is an 18-year-old senior at a private Catholic school with plans to attend an Ivy League college next year, where she was recruited for track and field. Her boyfriend is attending the same college.

Rylee plans to major in Deaf Education and Integrated STEM Education, with the goal of earning two bachelor’s degrees, a master’s degree, and three teaching certificates when she graduates. Then, she plans to earn her doctorate in Deaf Studies and Deaf Education.

Rylee has exceeded every expectation the doctors had for her — by miles.

She’s received the Presidental Volunteer Lifetime Achievement award for her more than 4,000 hours of volunteerism, specifically with the homeless. She has cooked pancakes for the homeless in her community on Sundays since the time she was six years old and learned that the soup kitchen was closed on Sundays. She created a community service initiative when, at the age of nine, another child used the word “retarded,” inspiring Rylee’s mission to teach children how to use words that don’t hurt others. She’s played football on an all-boys team and she’s also a beauty pageant contestant.

Right now, she’s preparing to compete in Miss New Jersey, alongside her sister. “If I win New Jersey I’ll be breaking a lot of those stereotypes,” she said. “Along with that comes educating people and having me be an advocate for Trisomy 18.”

In addition, Rylee finds purpose in helping families navigate a new Trisomy 18 diagnosis.

“Doctors are giving these parents such a lack of hope,” she said. “As doctors, people trust them. They’re supposed to know what’s best. If my mom had listened to them, I wouldn’t be here today. I wouldn’t be hitting these milestones and I wouldn’t have these goals. [I want to give them] that little glimpse of hope that their baby can live and have a successful life.”

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