People Were Cruel About Her Baby’s Rare Genetic Disease But Her Response Turned The Entire Conversation Around
damircudic | Canva When mom Ember Torres started posting videos on TikTok to share her love for her baby boy, Derek, with the world, she didn't expect the response she'd get. Unfortunately, people on TikTok proved the world can be a cruel place for people with differences, even when those people are infants.
Torres's videos of Derek, who has a condition called holoprosencephaly, started getting lots of views and attention from people who had shockingly horrible things to say. One of her earliest videos with Derek has 6.6 million views and 515,000 likes — and is heartbreakingly riddled with hateful comments, such as "He doesn't deserve this," "Painful to watch," and "What is it?"
The 9-month-old whose videos Torres often captions with hashtags like #lovemyson, #mymiraclebaby, and #derekstory was born with holoprosencephaly, also known as holoprosencephaly sequence or HPE.
People were cruel about her baby's rare genetic disease, but her response turned the entire conversation around
What is holoprosencephaly?
According to the National Organization for Rare Disorders (NORD), HPE is a rare condition that results in abnormal development of the brain due to the failure of the forebrain to develop normally.
Torres explained in a mini-series she called "Storytime with Derek" that she and her partner didn't know Derek had HPE until she had an ultrasound and MRI when she was eight months pregnant.
They already knew Derek would have problems with his spine, which was crooked, clubbed feet, and kidneys of different sizes. "Nothing too serious, but we still think that there was something wrong," Torres said.
Doctors told Torres that most babies with HPE "don't live to birth, and if they do, they don't usually live past it."
“For a while, they would ask us if we wanted to abort him, and it was something that we talked about quite often, and it was something we were both scared of," she continued. "Because we knew if he did have this gene, letting him live would basically be torture to him."
“For a while there, it was really hard having everyone tell me that my son was just gonna die, especially when I could feel him and how strong he was," Torres explained. "Just feeling how strong he was, feeling him kick to his dad's voice and just having hiccups, these little things made me think that he might live even with these things.”
Rather than supporting the young mom, many cruel TikTokers started commenting on her videos, suggesting she should put the baby 'out of its misery'
Wesley Tingey / Unsplash+
However, they were willing to take a chance and be "selfish," as she (and some TikTokers) put it, to see their baby and for Ember to give birth.
"We weren't ready to let him go. And if it’s selfish to wanna meet him before that, then yeah, we were selfish parents. But I am so glad that we did, because he lived. He wasn’t dying, he wasn’t suffering, he wasn’t... he was fighting to stay alive, but not in a sense that it was a chore for him... Just in the sense that I’m here and I’m alive.”
Torres responded to those people bullying her by saying, “We know he’s not normal. We know he’s gonna have some difficult things, but we also know he’s just like a regular baby.”
“He still feels, he still learns," Torres explained. "He’s not suffering. He’s not in pain. He’s not fighting for his life to this day, no.”
Soon after he was born, Derek had tracheostomy surgery so he would be able to breathe more easily, and thankfully, it was a success. The doctors also gave Derek a feeding tube because they assumed he wouldn’t be able to eat by mouth, as he didn’t have a second airway.
Regarding the comments saying Torres should have had an abortion, Torres said she and her partner were ready to let him go if what the doctors thought was true.
The hateful comments continued, flooding Torres shamefully, but the devoted mom clapped back with a powerful point
"He is a baby. He is a human being with a soul, with a conscience. You can’t just put them down because you don’t like them.”
No matter how many hate comments Torres gets, she says she will fight for her baby and defend Derek till the end, just as Derek fought for the right to be born.
“He’s my baby," she said, "I’m gonna love him no matter what.”
In response to her haters who are worried about Derek being bullied when he gets older, Torres said, "You guys are all worried about him getting bullied later on in his life, you guys are bullying him right now."
“You guys are worried about how other people are going to react later, maybe worry about how you are reacting right now." Torres has said she will continue to answer respectful questions about Derek to show that babies with HPE can survive and should be allowed a chance to live.
Megan Hatch is a writer at YourTango who covers pop culture, love and relationships, and self-care.
