Allison Blosfield says doctors offered to terminate the pregnancy twice. "I was just like, I could walk away. I could be done with this whole nightmare,” she said. “And after I took a breath and thought it through, I was just like, ‘no.’”
Allison Blosfield from Lake Stevens, Washington, and her husband, Eric, went through an experience that no parent should have to go through. It started early in her pregnancy when doctors shared that there was a 77 percent-positive test result for Down syndrome.
“It was just kind of this instant sinking feeling,” Allison told Inside Edition Digital’s Andrea Swindall.
“My husband's reaction when I told him that our baby was going to have Down syndrome was very calm, and it was just, ‘Whatever happens, babe, we'll roll with it. It's cool. Don't worry about it.’ While I'm sitting there sobbing, freaking out.”
She found solace in a welcoming online Down syndrome community after sharing the diagnosis on social media.
At a later check-up, more difficult news followed a routine nuchal translucency test. This test is done during the first trimester to check a baby's risk for congenital disabilities and heart problems, according to Web MD.
“The doctor came in to tell us that the test results weren't good and that they believed he was developing a condition called hydrops,” Allison said. “Which is when excess fluid builds up underneath the baby's skin, and it goes throughout their body.
“They told us that eventually it would reach his heart and his lungs, and then his heart would stop beating.”
Hydrops fetalis is a condition that could happen to any child. It is a life-threatening problem, and about half of unborn babies with hydrops will not survive, according to Stanford Medicine.
While waiting for more answers about their baby, Allison and Eric decided to name him.
“I did not want to go back to that next appointment without naming him,” Allison shared. “Ethan, which means strong and enduring, is just so fitting for him.”
As check-ups continued, Allison and Eric were aware that at any moment, Ethan’s heart could stop.
“At that point, they offered us a termination,” Allison recalls. “And I remember sitting there when the doctor said, ‘Here's your options. We can terminate.’
“And I was just like, I could walk away. I could be done with this whole nightmare. Because the level of fear that you feel, the level of anxiety that you feel, and I was just like, I could be done. I could just be done and run away. And after I took a breath and thought it through, I was just like, ‘no.’”
The couple decided to keep Ethan and spend the time left with him at home as a family. They continued to prepare for both his birth and his passing.
One day, Ethan shocked Allison by kicking.
“I was like, ‘He's alive!’ It was such a big breath of air. After that five-day spurt, I never went more than a day without feeling him move inside me. It just was like this constant: he's okay. He's okay.”
At 18 weeks and already further along than Allison thought she would ever get with Ethan, doctors shared promising news.
“The doctor comes in, and he just goes, ‘Well, this never happens,’" Allison said. “And they were just like, ‘The hydrops is gone, you guys.’ We just sat there, we're like, ‘Oh my gosh, is this what it feels like to witness a miracle?’"
But that euphoric feeling was temporary, as more difficult news followed; doctors said they could see that Ethan had a heart defect.
“They told us that his heart defect was so severe that they expected that he would be a fetal demise case so that his body would give out in the womb and he wouldn't make it to birth,” Allison said.
“They told us that if he did make it to birth, survived birth, that it was likely he wouldn't live more than 24 hours.”
At 24 weeks, the medical staff again offered them the option to terminate the pregnancy.
“At that point, I was annoyed,” Allison said. “I was like, ‘No, we're good. I'm scared right now, but we're keeping our baby.’"
Since termination wasn’t something the couple wanted to do, doctors devised a plan. If Ethan could reach 36 weeks, he could have heart surgery. The next few weeks were tense as appointments continued, and Ethan’s health was monitored.
At 35 weeks, Allison went into labor a week sooner than they hoped. She and Eric decided that they would still fight for Ethan’s life.
On Dec. 13, 2022, Ethan was born, weighing seven-and-a-half pounds. Because of his condition, Allison met him on FaceTime.
“So they held Ethan up to the screen, and he's sitting there crying, and I was able just to touch him through the screen,” Allison recalls. “And we all breathed when we heard him cry. And I will never forget this. I heard my husband just make this sound of just relief leaving his body.”
Allison, Eric and Ethan’s life living in a hospital began. The pair didn’t leave Ethan’s side. They worked towards getting Ethan stronger and able to receive open-heart surgery.
“Every few days, we'd wean down his oxygen support, and we would watch to see how well he handled it,” Allison said. “And then one day, they did an oxygen wean, and he ended up kind of just falling off a cliff at that point. And all of his numbers started to get really bad.”
After months in the hospital, an 11-hour open-heart surgery and various other procedures, Ethan’s health began to decline.
Allison and Ethan had a choice to make.
“We had been told many times that he was getting worse and that he likely wasn't going to make it,” she said. “But in our mind, we had heard that so many times before, and he had come so far. We had gotten days away from going home once. So in our minds, we were like, 'We're going to get back there. We are absolutely going to get back there.'
“And we had gotten ourselves in just such a mode of just fight, fight, fight, fight, fight. Every day, there was a new fire. Every day, there was a new battle to go through.”
The couple realized fighting wasn’t enough.
“The nurse practitioner said to us during rounds, 'If it gets to be time where you'd like to let him go, we can clear the roof for you guys, and we can take all of his equipment up to the roof, and you guys can sit and hold him again. And we can make it a very peaceful experience for you guys.'
“And then almost simultaneously later that day, we both were like, ‘We have to stop fighting. We need to let him go.’
A decision was made. The pair took Ethan to the roof of the hospital. It was his first time going outside. Once outdoors, Allison got a sign that everything would be okay.
“We got out to the roof. And only some days in Seattle can you see Mount Rainier,” she said. “And as we walked out there, it was Mount Rainier, and it was just huge and big in the sky.
“Mount Rainier, it's a very special mountain to me. Climbing Mount Rainier was a way that I dealt with my sister's passing.”
Staff moved a park bench to face the mountain and wheeled over Ethan's hospital equipment.
“And it was in my arms that they took him off of his life support,” Allison said, filled with emotion. “We got to have music playing. We got to sit, and hold him, and tell him how thankful we were for him. We got to sit and just thank him for being our son, for fighting as hard as he did to stay with us. And we told him that it was okay to go, and it was okay to not fight anymore.”
Ethan died on June 30, 2023. His journey was 199 days long.
“It was a very, very peaceful, calm experience the night Ethan died. And the experience that we got was so special and so beautiful,” Allison said. “And it's such a wonderful memory that we get to hold on to forever.”
The following month, the Blosfields honored Ethan with a celebration of life.
“I did not want to go to a sad, everyone was wearing black, funeral, and sit and sob. I already was sad,” Allison said. “My son lived for 199 days, and we wanted to celebrate that. He pushed past more stuff than doctors ever thought that he would, and he broke barriers and proved that miracles happen. And I wanted to celebrate that, and so did everybody else.
“It was literally everything that I could have ever wanted.”
Throughout their experience, Allison and Eric publicly shared their journey with Ethan on social media.
“When I very first got Ethan's diagnosis, social media was one of the very first places that I went to look for resources for other individuals who might be experiencing the same thing,” Allison said.
“And I found a couple people, but that really, the lack of finding people is what kind of drew me to sharing openly about what was going on in our world.”
The family is now adjusting to their new normal.
“Adjusting to going through grief with your partner is hard, because grief is going to come up in ugly ways. It's going to come up in beautiful ways. Grief is not just sitting on the couch crying, holding your son's stuffed animal. It comes out in anger, it comes out in frustration, it comes out in denial in so many different ways.”
“Eric and I have developed the habit and gotten really good at seeking each other out when we're grieving.”
Also instrumental in their grieving process has been their toddler, Emmarie.
“Our daughter, I mean, She keeps us smiling,” Allison said. “We'll be in the middle of just feeling such a loss, thinking about Ethan, and she just pops up and does something and just gets us laughing. And it's so amazing to have another child at home that helps pull you through your grief because she does. And she's such a light in our home.”
Since Ethan’s death, Allison has found comfort in pumping and donating milk. She also raises awareness for Down syndrome. Ethan’s story is a tough one to share. But Allison knows it helps her and helps others.
“I actually still feel a good amount of healing and peace talking about it and sharing Ethan's story,” she said.
“I had so many people reach out to me who said that they got a similar diagnosis alongside me. And they just silently followed our story, and they felt not so alone. And it just felt like they had a friend on the other side. And it is very humbling to have people share that kind of thing with you.
“But also they helped me. It was like I had this huge community cheering me on and praying for me. And social media might have some really big downsides, but it brings people together in such amazing ways.”
Allison has no regrets about the path she took, and she wants others in her situation to know that it is possible to heal.
“Being able to acknowledge that situation that we were in, it's temporary. Your situation is temporary. It's not going to last forever. And focusing on that and focusing on moving forward. I don't think people move on from losing a child, but I think that you can move forward, and we're moving forward.”
