Human Interest

Despite a trisomy diagnosis and multiple miscarriages, they didn’t give up hope

Ethan Hernandez, Trisomy 9

Nothing went as Kristin Hernandez and her husband Chris had imagined when trying to conceive. About a year after they were married they were ready to have a baby, but God had other plans.

“I was in my early 20s when I got married,” Kristin told Live Action News, “We didn’t expect getting pregnant would be hard. After a while, we pursued help with a doctor and blood tests didn’t see anything wrong with me.” After two years of trying, the couple was advised to seek help at a fertility clinic.

Thankfully, they never had to.

“My husband and I felt overwhelmed by the options out there, so we thought, ‘Let’s take our time.’ It was important for us to pray about that decision and seek wisdom from the people around us. During that time, I got pregnant with Ethan. It was miraculous.”

Baby Ethan was an answer to prayers and the couple celebrated. At their 20-week anatomy scan, they were excited to find out if they were having a boy or a girl. “At this point, I’m 26, no medical history and I hadn’t met anyone who had pregnancy complications,” said Kristin. “I just wanted to know what color to paint the nursery.”

Ethan Hernandez, Trisomy 18

Chris holding Ethan. Photo courtesy of Kirstin Hernandez. Do not reprint.

While they did learn they were having a boy, the sonographer also noticed markers for what was likely a Trisomy condition. Unsure which Trisomy Ethan had, doctors were concerned about how his heart and brain had developed, and that he was on the small side for his age. But he had a strong heartbeat, and Kristin could feel him kicking and moving.

The couple was offered an amniocentesis so they could pinpoint which Trisomy condition Ethan had, but the procedure carries a risk of miscarriage, and they didn’t want to take that risk with their son’s life.

“We asked if finding out if he had Trisomy 13 or Trisomy 18, does this help treat him if you know ahead of time. And they said, ‘No, it helps you have information so you are equipped.’ We said we want to carry him to term. We want him for as long as he’s given. We want to fight for his life,” said Kristin.

The family was referred to specialists and every doctor guessed that he had Trisomy 13, but he went without an official diagnosis. The first time they were offered an abortion, Kristin could hardly respond.

“The words that came out of my mouth were, ‘He’s kicking me right now.’ I was surprised,” she recalled. “At the time they were giving me these options I was 21 – 22 weeks pregnant… It felt shocking to me because he was active and had so much life.”

Ethan Hernandez, Trisomy 9

Kristin and Ethan. Photo courtesy of Kirstin Hernandez. Do not reprint.

Multiple times, the couple was offered an abortion as if it were a caring and humane choice. “They asked us, ‘Are you prepared to have a baby with really hard needs?’ My answer would be, ‘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.”

Kristin and Chris knew they would do what they had to do to care for their son, and aborting him was not it. “This is our son,” she said, “and we love him and we’re going to cherish the time we are given with him.”

The couple was intentional with their time, reading to Ethan at night and taking him camping. “We knew he was there and could hear us. We were clinging to a sliver of hope that he would survive this,” she said.

Their time was unfortunately not long. At 28 weeks, Kristin’s water broke at home and the next day, August 16, 2015, Ethan was born via emergency C-section. He was alive but was not responding to efforts to stabilize him.

“I saw how hard they were really trying,” said Kristin. “He lived for an hour and a half and died while we were holding him.”

Ethan Hernandez, Trisomy 9

Kristin and Chris with Andrew and a photo of Ethan. Photo courtesy of Kristin Hernandez. Do not reprint.

She continued, “We spent that hour and beyond holding him and taking pictures. We had some family come. I wanted to selfishly soak up that time. I didn’t want to pass him around. 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.”

She saw that Ethan had dark hair like Chris and a nose like hers. “Anomalies and all, he was just so perfect and precious. I’m so grateful I can look at my pregnancy and have no regrets,” she said. They continued to hold Ethan for a few hours after he died.

“I remember that night, being in the recovery area, everyone being gone, just sobbing off and on. I remember saying to Chris, ‘I want to do this again.’ And … I could tell he was so broken. I’ve never seen him sob like on the day that Ethan died. Losing his firstborn child and watching his wife go through labor and an emergency C-section and he was not ready to think about [having another baby] right now. I said, ‘I know, but this feeling of being a mother, I just want to do it again.’ Within a few weeks, he was like, ‘When it’s safe, we’ll do it again.'”

Cord blood testing revealed that Ethan had full Trisomy 9, an extremely rare condition. Their doctor told them she had never delivered a baby with Trisomy 9 alive because women usually miscarry early in pregnancy. For Ethan to have made it to be born alive at 28 weeks was unheard of, and he had lived outside the womb for 93 minutes. He was a miracle.

Thinking back on being offered an abortion, Kristin said at first she was angry, but now she feels sadness because in the doctors’ minds, they weren’t trying to hurt her. They were trained to think abortion is the caring option for a baby with a health condition.

“These doctors, it’s so ingrained. It’s a worldview. You, in your mind, think you’re helping me,” she said. “It was presented as, ‘Do you have support? What is your financial situation? You can end this now and try again. You have your whole life ahead of you. Think of what your life will look like if he’s born and survives. [Abortion] was always presented with a tone of caring. I could see how someone who is confused could get swept into that.”

Ethan Hernandez, Trisomy 9

Baby Andrew with a photo of Ethan. Photo courtesy of Kristin Hernandez. Do not reprint.

Six months after losing Ethan, they were ready to try again. Within two months, they were expecting a baby but had a miscarriage soon after. A third pregnancy also ended in miscarriage. Doctors ran tests to see if they could pinpoint an issue, but all the tests came back clear. The couple took a break from trying and started looking into adoption. Kristin also began changing her diet and focusing on her health at the advice of her doctor. Soon, she found out she was pregnant with identical twins.

“That just felt like such a miracle,” she said. “Everything was going really well.”

They withdrew from the adoption process, but a week later they were devastated to learn that the twins no longer had heartbeats. After that, Kristin didn’t feel like she could go through another loss. They decided they were done trying to have children. But a month later, Chris had a change of heart.

“He said, ‘I can’t shake this feeling that we should try one more time.’ And I was like, ‘We can’t! This doesn’t work for us.'” said Kristin. They ultimately decided not to think about it, not to track ovulation but not to try to prevent pregnancy either.

“I’m pretty sure I got pregnant that week,” she said. That pregnancy “carried its own joys and sorrow.” She was happy to be pregnant but didn’t want anyone to think she was trying to replace Ethan. When she found out her baby was healthy, she felt both happiness and guilt.

Then at 22 weeks, Kristin went into labor and was placed on hospital bedrest. Doctors were able to stop the contractions and she stayed on bedrest for over two months. Their son Andrew was born at 32 weeks and spent four weeks in the NICU. He is now a healthy kindergartener.

“Parenting and all the things that come with it feels like a privilege because we always felt the absence of it before,” said Kristin.

She wants parents facing a prenatal diagnosis for their baby to know that they won’t feel ready to have a child with a health condition, but they will be given the grace they need to move one day at a time. “Being able to meet your baby and know that you did everything you could for your baby is priceless and nothing compares to that,” she said. “You are a mom to your baby now, and none of that season is wasted. I knew I would do it again, and that’s not to sugarcoat it, but it is worth it.”

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