This Girl Has Condition Only About 100 People in The World Have
“She’s going to live eight hours in my arms and she will only know love her entire life, then she’ll pass in my arms and we’ll bury her. That was literally our plan.”
Anna Owen didn’t think her daughter Josephine would live for long after she was born.
“We were done having kids. Like, I thought, you know what, three is good. They can fit in the van. Let’s get a puppy. We got a puppy and then two days later I took a positive pregnancy test. So of course that threw me for a loop. At 20 weeks, they went for a checkup. She was in a funny position so they couldn’t get everything. And the doctor comes in and slides an ultrasound photo across the table and said, ‘I think your daughter has hydrocephalus, which is a buildup of fluid in the brain.’ I really wasn’t worried about it or concerned or anything. So we talked to the doctor and he said, ‘After reviewing your scan, your daughter does not have hydrocephalus.’ And we’re like, ‘Oh good.’ He said, ‘She’s got all these other things.’ We went, ‘What?’
It just seemed like her body was not right somehow. The doctors never really like told us, ‘You should terminate,’ but they kind of gave us this look like, ‘I mean, it’s going to be really, really bad.’ But we made it very, very clear from the beginning that no matter what they thought she had or what she didn’t end up having, we were not going to terminate. We’ll carry the baby all the way to the end. And I’m prepared for the worst-case scenario: she’s going to be born and die in the hospital and I’m never going to bring her home, and I’m going to have three kids forever but one angel baby, right? So I never prepared. I did not gather a crib. I did not buy clothes. I didn’t have diapers. I purposefully did not buy any of those things and I was like, ‘I can’t, I can’t go there.’ And I just… there was a lot of crying and a lot of tears and a lot of like, ‘Oh my gosh,’ but then also one of those, ‘I will cross that bridge when I get there.’
At 35 weeks, Josie was born. They gave her to me for a full 30 seconds with the nurse’s arm underneath her. I’m holding her. The nurse brings her over to me and then takes her away, never actually let go of her. So I’m holding her for like 30 seconds and they whisk her off to the NICU. We had a geneticist come in, then came down and actually put eyes on her and confirmed what she has. She has something called Antley-Bixler syndrome. It is a musculoskeletal condition. You think of an umbrella of another condition called craniosynostosis, which is a malformation of the skull. There’s an umbrella of syndromes that lay underneath it, and she’s one of them. You’re never going to meet another person in the world that has this. I was like, ‘Oh.’ And it goes, it’s about 1 in 250 million. I went, ‘Oh.’ Either way, between 50 and 100, she’s extremely rare.”
But Anna handled the news well.
“I know other parents that I have talked to who have special needs or very rare babies say that they just like screamed and cried and yelled at God and shook their fist and said, ‘How can you do this to me?’ Right? That’s not the direction I went. I was so thankful to have a name to something because now I’m like, ‘Okay, we have a name. We can go from here.’ I just really like sat with not ‘why me,’ but ‘why not me?’ So like, not like, ‘God, why did you do this to me?’ Not like that kind of situation, but more like, ‘Why am I so special and honored to be chosen to be Josie’s mom?’ I remember like maybe a week after she came home, bawling my eyes out to my husband on the couch, like, ‘Why in the world would God entrust such a beautiful, special, perfect human being to me? Like the most unqualified person, completely unqualified, right?’ And I was like, ‘I’m the last person in the world that should have a medically complex kid,’ you know? And so I never got mad at God, I was just confused. Like, ‘What does this mean? What am I supposed to do with this?'”
Anna and her family figured it out, and now Josie is four. The little girl lives with several health challenges.
“Basically, her bones did not grow correctly in the womb and they’ve caused a lot of problems. So she has underdeveloped parts. She has parts that are fused. She has parts that don’t exist. Like, she’s missing parts of her toes. Her feet are all like twisted up. And now recently we’ve discovered that she has scoliosis that has taken over her back. She has 17 doctors that she sees. She has a lot of accessories. So she breathes through her neck with a tracheostomy tube. She has a G-tube where she gets a lot of her nutrition. She has hearing aids that stick on stickers back here. So her bed setup looks very different than other people’s. She’s got an IV pole for a pump feeding at nighttime. She’s got a pulse oximeter that she sleeps wrapped around her foot to make sure she doesn’t have a problem at nighttime. She has a nighttime oxygen machine that puts humidity into her lungs. We take more precautions with her. She can’t go underwater, you know. Her bath time looks very different. Her eating looks different. Like, there’s just a lot of things that she does that are different. Look at me, yeah.
People would ask me like, ‘Well, what’s her life expectancy? What is she going to do in kindergarten? Is she going to ever walk?’ And I was like, ‘I don’t know. I don’t know.’ I am not worrying about tomorrow, I am worrying about right now. You know, I just remember going with the flow of it. And for the most part, that has done me good. Like not stressing out too much about what it’s going to be like 10 years from now, you know. Or especially when she was a tiny baby and we were just worried about keeping her alive. I don’t care if she goes to kindergarten, I’m worried about keeping her alive right now. You know, is she ever going to walk? I don’t know. I’m just worried about keeping her alive, you know. And even right now where she’s extremely healthy—she’s a very healthy four-and-a-half-year-old child—I still don’t like to think too far ahead, you know. So her cognitive level is on par. She is only a little bit behind because her physical anomalies have kept her from really being on track. There’s no reason she shouldn’t live a long and happy life. There’s no reason she shouldn’t do all of the things everybody else does: grow up, go to college, get married, have kids… that kind of thing. Barring anything that happens during puberty.”
Anna and her husband Nathan have three other kids who are 11, 9, and 6.
“I have never seen more natural-born empathy without pity. They are proud of their sister. Like, they are proud to be her sister, and they’re her siblings, right? Every time we go out in public and introduce like, ‘This is so-and-so,’ they’re like, ‘That’s my baby sister, she’s special needs, you know, and she’s disabled, and she’s amazing,’ you know? And they are all very protective of her. So she’s really like brought us together, and I feel like the presence of Josephine and everything that she really demands to live right has kind of brought me closer to what is truly meaningful and needed in life. I love you so much, Josie.”
The Tennessee family does have occasional interactions with others that are uncomfortable.
“Or like, I’ll find kids… kids will be staring at her. Like kids don’t have a filter, right? And some kids will be looking at her like this. And I go, ‘Do you need something? Do you need something?’ And they look at me like, ‘Oh.’ And I’m like, ‘Do you have a question? Do you want to come say hi? Like, you can come say hi.’ It’s usually people either stare out of either horror or like, ‘What am I looking at?’ you know? Like, ‘I want to get a closer look.’ Or it’s the kids that come up and go, ‘Your daughter is beautiful. Your baby is beautiful.’ And I’m like, ‘Oh, thank you,’ you know? It’s those stark… it’s the complete opposites, right? But I always welcome questions. Like I always just say, ‘You can ask her what her name is. Hi, what’s your name?’ Like, that’s a great place to start.”
At 4 months old, Josephine had surgery to put in four distractors, four metal plates, and 40 screws into her head. Social media helps her connect with other parents.
“I felt very alone when I first had Josie. I was very afraid of sharing Josie because I just didn’t want people to think she was ugly, was really what it was. And my very damaged heart could just not take it if anybody was mean to her. And so I started very slowly sharing her, but only pictures that I deemed worthy of sharing because they were from a certain angle or they weren’t close up on her face or, you know, things like that, right? Featured mostly me with this little bundle of whatever. Then I started to notice that the more I shared, the more people opened up about their own struggles with their own special needs kids or their own NICU experience or their own COVID baby experience or their own special needs, you know? And the more I shared, the more I realized that the good outweighed the bad ten to one. And so then I’ve created a lot of friendships over social media, over the internet, with people I never in my life would have met ever before, and people across the states and across the country and across the world, you know? She’s loved by people all throughout the world.”
Because she’s resilient, and she is focused on giving Josie the best life and helping others in a similar situation.
“Your life is not over. You are just now going to have to be a new person. And it’s okay to sit in your grief. It’s okay to mourn what you thought was going to happen, what you thought your life was going to be, but don’t live there. Don’t live in that grief. It will eat you alive. Like, feel it out. I think about turning a shirt right side out and you have to put your hands through all the little things to, you know, put the sleeve and stuff. I think of turning your shirt right side out, you’re poking through all of the pieces of like, ‘How do I feel about all of this?’ But in the end, you have to put your shirt on, right? In the end, you do have to go live your life. So if you sit in the grief and you live in the grief, you will be a shell of a human for the rest of your life. But if you acknowledge the grief, say like, ‘I see you, this sucks, this is hard,’ your life can kind of restart and be a fresh new perspective on things.”
For Inside Edition Digital, I’m Andrea Swindall.
