Stephanie’s Story
The EDS Zebra Club is home to many Fractured Zebra Families. We hope that by highlighting what is happening to our families with Ehlers-Danlos Syndrome that we can do our part to bring about much needed change to protect the families of medically fragile children.
It’s important to bring awareness to what these precious families are enduring, and we are so proud of them for being brave and sharing their stories.
“On July 20th, 2023 I woke up to my 20-day-old daughters’ owlet monitor going off saying her oxygen was low.
Two days prior to this, I noticed Quinn’s breathing seemed different so I had contacted our pediatrician and he kind of brushed it off, telling me to saline Quinn’s nose and suction it. The next day I was still worried about her breathing so I called our pediatrician again and he asked if Quinn was turning colors. I told him that she herself was not turning colors except for a really faint bruise/discoloration on her forehead (which had been present at her recent jaundice check as well). The pediatrician said to just keep doing saline and suction, so we did.
But with her owlet monitor now showing low oxygen in the middle of the night, we rushed Quinn to the ER. During testing and examination, they noticed the faint bruise on her forehead and asked what happened. I told them I wasn’t sure how she had gotten it and I showed them pictures of every day of her life so far. I had pictures of when it first appeared and how it looked days after (very very faint). They were instantly more focused on us not having a story for the faint forehead bruise instead of being focused on Quinn’s breathing. They said due to the forehead bruise they had to do a full skeletal survey to rule out abuse. I told them that was perfectly fine, whatever they had to do! I was so confident everything would come back fine and then they would focus on the issue that we brought her in for.
They made me hold down Quinn’s tiny body for over 20 X-rays of her entire body. At one point I had to tell them someone else would have to do it because I didn’t feel comfortable holding her down while she was fighting it. They took over and a little while later the room filled with doctors to tell us the results. They said Quinn had a left posterior rib fracture, corner fracture on the left tibia, and a right acromion (shoulder) fracture.
I honestly thought they were in the wrong room and were reading someone else’s results because there was no way that was my daughter’s. I asked them if they were sure these were for Quinn? They said yes and that they had to call CPS. I really don’t even know how to describe the feelings in that moment. Nobody could understand besides the others unfortunate enough to have gone through this. I was so unbelievably confused. How?! When?! She was literally always with me! She never seemed broken? How did I not know? I just didn’t understand. Only a handful of family members had even met her yet, she was still so young.
Quinn was transferred a few days later to another hospital where they found that she had laryngomalacia (an underdeveloped voice box) and she stayed there for a couple more days before being discharged.
During the hospital stay my mom helped us so much, staying with our oldest daughter who was 20 months at the time. My mom switched back and forth with us so we could take turns seeing both of our daughters. CPS had us bring our oldest in for a full skeletal survey and a body check to look for signs of abuse. They stripped her naked and examined her entire body. They found nothing. No bruises, no marks, no fractures.
Once Quinn was ready to be discharged, we were notified that we were no longer allowed to be alone with our children. My mom had to be with us 24/7 until further notice so we stayed at my mom’s house with her.
Two weeks later the hospital did a repeat skeletal survey on Quinn. This time the accusing child abuse pediatrician (CAP) said Quinn had the posterior rib fracture and shoulder fracture, but there had not been a tibia fracture after all. I asked a million questions. Could the rib and shoulder fractures have been from birth? The doctor had to pull her out! The CAP said no. Could we have accidentally swaddled too tightly? He said no. I asked if the car seat could be too tight? He said no, not at all. The CAP told us, ‘This is what happened: someone got frustrated with the baby and lifted her up and squeezed her, but they stopped themselves before they shook her.’ My husband and I just looked at each other because we didn’t understand where he came up with this story.
CPS set up a team determination meeting where we first learned that they were petitioning to take our children from us and terminate our parental rights. No prior history, no history of anything, MULTIPLE family members attending via zoom to tell them what good parents we are. None of that mattered to them. They told us they were placing our children with a family friend and we could no longer sleep in the same house as them. I didn’t understand how this could even happen to us. I had spent my entire life wanting to be a mother. Everything I do is for my children. Now our children were being taken from us and our names were put on the central abuse registry. They didn’t need any proof besides a child abuse pediatrician claiming that this was abuse.
I felt like I was going to die after we left that meeting. I was crying so hard outside and our caseworker came out and hugged me and held me, telling me she was so sorry because she knew we didn’t do anything and didn’t know why it was going this way.
The only time I had been away from my oldest daughter was when I gave birth to my youngest. I didn’t know how to be without my children. We were thankfully allowed to be with the girls from the time they woke up, until they went to sleep. I asked if we could sleep outside of their placement home because I couldn’t be away from them. CPS said if the placement family was okay with it, that was fine. So my husband and I slept in our car outside of our family friend’s home for over 80 days.
We voluntarily did every service CPS asked of us. My mom found a really good attorney and by the grace of God our children were assigned a good GAL (attorney appointed by the court to represent a child’s best interests). On October 31st we went into court so scared, but thankfully ended up being told ‘go get your children, take them trick-or-treating and go home!’ Our ordeal was far from over BUT the girls came home!
We continued to voluntarily complete more services. CPS had a lady come to my house 5 days a week for 2 hours to sit with me and my children. She asked me what happened to result in CPS referring us into this service. When I told her our story, she cried. She ended up trying to end services early because she said she didn’t feel we needed this and she was learning more from us than we were from her. CPS said no, so we completed that service for 2 months.
I did nothing but research every single day. I was desperate for answers. I knew something else had to be going on with Quinn because this wasn’t abuse and doctors weren’t listening to me!
My research led us to an endocrinologist who helped us make sense of unexplained health issues that had run in our family. After thorough testing and examinations he told us without a doubt it was Ehlers Danlos Syndrome, a genetic connective tissue disorder that had been passed down to our daughter. EDS is caused by a defect in collagen and presents with a wide variety of symptoms affecting skin, bones, joints, and organs.
I also found a pediatric radiologist who reviewed our daughter’s X-rays. She wrote a lengthy report stating that there was never even a shoulder fracture like they were claiming. Her report noted that in the initial skeletal survey they described ‘irregularity’ of the acromion and said it ‘could represent a fracture’ but in fact it was not a fracture.
She did see the rib fracture, but she explained how there were no shards in any areas around that bone and no injury to the lungs. She also noted that the fracture was asymptomatic on clinical exam (no tenderness, no bruising) as described by the clinician who evaluated Quinn when the fracture was first found. Her report stated that ‘non-displaced rib fractures without associated injury are not diagnostic of significant force, nor are they uniquely indicative of intentional harm.’ She also included that bone fragility had not been excluded in our case, adding that unexplained fractures could be the first signs of a collagen disorder.
Our trial was set to begin early December 2024. I was TERRIFIED! I couldn’t sleep for days because it’s all I could think about. By this time, both of my daughters were in physical therapy. Their physical therapist pointed out their hypermobility before I even told her. I did end up telling her our story and she said they definitely presented like children with hEDS and she was willing to testify at trial for us.
A few days before trial was set to begin, I got a call from my attorney. He said the prosecutor had a deal. It wasn’t the deal that we wanted, BUT it got us out of a trial and everything would end. They said they knew we did not hurt our daughter, but someone did. We just wanted this nightmare to end so we signed their papers.
These last 17 months haven’t even felt like real life. It felt like such an out of body experience because I didn’t know this was even possible. I didn’t know that innocent people get accused of child abuse way too often. This really does affect your entire life forever though. Every trip or fall, you’re terrified of. Every bruise from playing, you’re scared you’ll get blamed for. We’ve gone back and forth wondering if we should put cameras up in our entire house in case of an accident so we have proof nobody did it. I don’t want to do anything at all that involves leaving my children with anyone because at one point, there was a chance I could’ve had them taken from me. I almost feel like I smother them with love and attention now because I was so scared that I’d never see them again. I’m just so beyond thankful to have my children.”
Stephanie’s Story first appeared on Parents Behind The Pinwheels
There are so many other families like Stephanie’s who have been impacted by the misdiagnosis of child abuse. Their stories can be viewed on Parents Behind the Pinwheels.
Return to our Fractured Zebra Families on the EDS Zebra Club.
