Allison and Eric Blosfield were excited to welcome their third child to the family when they got some scary news early in the pregnancy. Doctors told Allison that their baby, a boy, had a 77% positive test for having Down syndrome.
Allison was scared of what challenges her child might face. “It was just kind of this instant sinking feeling,” she told Inside Edition about receiving the diagnosis. However, when she told her husband Eric, his response was positive.
“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,” Allison recalls.
She soon took to social media to share her son’s diagnosis and received overwhelming support from the Down Syndrome community online. Other parents assured her that she would love having a child with Down syndrome and that they were in for a new normal full of ups and downs but mostly ups, and a whole lot of love.
But then at their next pre-natal appointment, the Blosfields received much more devastating news. After a routine test, the doctor entered the room with a grim diagnosis of a life-threatening condition.
“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 remembers. “Which is when excess fluid builds up underneath the baby’s skin, and it goes throughout their body. hey told us that eventually it would reach his heart and his lungs, and then his heart would stop beating.”
This condition could happen to any child and had nothing to do with the baby’s Down syndrome diagnosis. About half of children diagnosed with hydrops in utero do not survive. The Blosfields steeled themselves before their next appointment, hoping for no more bad news. But before they went back in, Allison says, she felt a strong urge to name their baby boy.
They chose the name Ethan, Allison says, “which means strong and enduring, is just so fitting for him.”
Armed with a name for their child, the Blosfields entered the doctor’s office again, and were told bad news, again. They were told the fluid build up from the hydrops could stop Ethan’s heart at any moment. Doctors offered to terminate the pregnancy, citing the low chances of survival.
“At that point, they offered us a termination,” Allison says. “And I remember sitting there when the doctor said, ‘Here’s your options. We can terminate.’
She admits she thought about it for a brief moment, wondering if she should jump off of the roller coaster. “I was just like, I could walk away. I could be done with this whole nightmare,” she remembers. “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.’”
She and Eric let doctors know that they would be continuing the pregnancy, hydrops and all. Doctors said that Ethan would probably not survive past 16 week gestation, so in a strange, emotional existence, they prepared both for his birth and for the fact that he could pass away at any moment.
Then one day, Allison felt it: a kick! She was ecstatic. Her baby was alive!
At 18 weeks, still pregnant with a living baby, Allison and Eric went back to the doctor for another ultrasound. This time, they received the kind of news they had longed for. Allison describes the incredible moment: “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?’”
Unfortunately, the Blosfields were not able to ride that high for long. Soon, more devastating news followed. Ethan had a heart defect, and it was a bad one.
“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.”
Again, the Blosfields were offered an abortion to terminate the pregnancy, this time at 24 weeks. But their answer was the same.
“At that point, I was annoyed,” Allison recalled. “I was like, ‘No, we’re good. I’m scared right now, but we’re keeping our baby.’” It was time to come up with a game plan for the rest of the pregnancy and the hopeful birth of their baby boy.
The medical team strategized that if Ethan could make it to 36 weeks, he could have surgery. Week after week, knowing their son could die at any moment, the Blosfields held on to hope. But, Allison went into labor at 35 weeks. Ethan was born on December 13, 2022. Too weak for surgery, he spent his days and nights in the NICU with his parents by his side.
Finally, Ethan was able to receive open heart surgery, but sadly, it wasn’t enough. He and his parents fought and fought, but it soon became clear that Ethan would not survive. Allison describes how hard it was to accept this, saying, “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.”
One day, she and Eric came to the realization at the exact same time that it was time to let their beautiful baby boy go.
The hospital staff made it special for them, allowing the family to spend time together on the roof of the hospital. It was Ethan’s first time going outside. They turned a bench to face the beautiful Mt. Ranier, and the family settled in to spend some precious moments together.
“And it was in my arms that they took him off of his life support,” Allison remembers through a rush of 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 passed away on June 30, 2023.
Despite losing their child, Allison and Eric are so happy they got to meet him in this life, that they gave him a chance to fight for his life instead of ending the pregnancy. Allison describes Ethan’s funeral as a celebration of his short life.
“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.”
Throughout the whole ordeal, Allison used social media to tell Ethan’s story, and that continues as she uses it to help her heal. She has no regrets about their choices, and she wants everyone to know that.
“Being able to acknowledge that situation that we were in, it’s temporary. Your situation is temporary. It’s not going to last forever,” she says encouragingly. “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.”
