Jenna’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.
“At our daughter Willow’s two month checkup, we brought up concerns about bruising on her belly. Her pediatrician did some lab work which showed that Willow had low white blood cell count, high platelets, low neutrophils and several other concerning results. Our pediatrician put in a referral for Willow to see a pediatric hematologist and said if any other bruises popped up before the appointment to let her know.
On January 5, 2024, a couple weeks before the upcoming hematology appointment, I noticed a bruise on Willow’s left foot. I immediately brought her into the pediatrician’s office who looked her over and couldn’t see anything obviously wrong other than the strange bruise on her foot. We went back and forth as to what it could be and also discussed the terrifying possibility of Willow having leukemia. The pediatrician sent us to a nearby hospital to get blood drawn. I left the office sobbing, thinking Willow had cancer.
After labs were run, our pediatrician called to let us know the good news was it didn’t look like cancer, but the bad news was Willow’s liver enzymes were extremely high and some of her other lab work was also abnormal. She wanted to send us to the children’s hospital to figure out why Willow’s liver was so ‘angry’.
My husband Tucker and I were terrified Willow was in liver failure or something. When we arrived at the children’s hospital, we had no idea of the nightmare we were about to endure.
When asked why we were there, we explained that Willow’s liver enzymes were extremely elevated and that her pediatrician wanted us to get an ultrasound and further lab workup. They asked what had prompted our pediatrician to run blood work and I told them about the bruise on Willow’s left foot and also that we had an upcoming hematology appointment scheduled at the same hospital.
A little while later, a ‘forensic nurse’ came in with a camera and explained to us that any time a child came in with bruising, it was standard for her to come in and take pictures. About an hour later, a doctor came in and said that because Willow had a bruise, it was also hospital policy to take a full skeletal survey (full body x-rays). We agreed because we just wanted to find out what was wrong with our daughter. Willow had three to four X-rays of each part of her body from her head to her toes. My mama heart broke having to hold her down for the x-rays while she was screaming, looking at me for help.
Hours later, a doctor told us that Willow had multiple fractures, all in various healing stages and that they were admitting her. I looked at him in disbelief. He told us that Willow’s skull, her left wrist, a rib, and two toes were all fractured and that CPS and law enforcement had been called.
Tucker and I looked at each other in shock, both with tears streaming down our faces. Then immediately we just hugged Willow. We had so many questions! How did this happen? Did they have the right x-rays?? Willow was the happiest baby so we were confused and heartbroken that she had so many fractures.
They then went on to accuse us of all sorts of heinous things. We were told that the only way Willow could have sustained her skull fracture was if one of us took her head and smashed it against something. They told us that we had yanked and dragged her across the room by her legs/ankles and also accused us of shaking her.
No matter what we said, they didn’t listen. We tried to tell them about our family medical history, but they didn’t care. They just kept telling us that we hurt Willow. We asked repeatedly to see the x-rays, but they refused to show them to us. It was infuriating and we were still just trying to process the fact that Willow was fractured!
They did a CT scan of her whole body and an MRI of her brain which she had to be sedated for. While testing was still ongoing, we were interrogated at the hospital by both CPS and law enforcement.
Willow’s MRI, CT scans, and ultrasounds all came back NORMAL. No signs of trauma. But lab results showed Willow’s vitamin D levels were so low, it was not even registering a number!! We brought the result up with one of the accusing doctors and asked if that could have anything to do with her bones being fragile. We also brought up the fact that Willow bruises easily, so why weren’t there any bruises in the fracture locations? The doctor told us vitamin D has little to do with your bones, that most babies don’t bruise when abuse is present, and that one of us had hurt Willow.
Willow was diagnosed with “Non Accidental Trauma” and we were told we couldn’t be alone with her. If we couldn’t find someone to come stay with us, Willow would be placed into foster care. Tucker called his mom who was at our house watching our older daughter, Meadow. We actually begged them to allow his mom to bring Meadow up to the hospital to be examined as well, to show them that she wasn’t abused and that this was a medical condition in Willow, but they refused to examine Meadow so Tucker’s dad watched Meadow while his mom headed to the hospital.
We were discharged on a safety plan and as instructed, I texted our caseworker because she said she would come out to look at our house. She didn’t end up coming out until almost a week later. Meanwhile, we were all just sitting around waiting every day, terrified they were going to show up and arrest us or take our children away. Everywhere I went in the house with Willow, my mother in law came with me to comply with our safety plan.
The following week, we had a follow up appointment with our pediatrician. When she walked in the room, I burst into tears. She said she was shocked when she was contacted by CPS and when she read the report. We went over Willow’s labs and she told me that Willow needed to be on 2,000IUs of vitamin D and we discussed Osteogenesis Imperfecta (brittle bone disease) because she noticed symptoms of OI (blue sclera, trouble swallowing, easy bruising, poor growth, small stature, multiple unexplained fractures, etc). She said she would write a referral for Willow to see a doctor to look more into her condition.
Having the diagnosis of “Non Accidental Trauma” (NAT) created many issues for us finding and getting the necessary help/treatment for Willow. When most clinics saw “NAT” in her records, they said they couldn’t help us. But I didn’t give up. I spent hours upon hours doing research on OI and trying to find somewhere to help and finally I found a doctor who was willing to review all of Willow’s records. He stated that doctors can often have ‘tunnel vision’ in these cases and he said that Willow’s skull ‘fracture’ was actually not a fracture at all, but an accessory suture, which he said are commonly misdiagnosed as skull fractures. He also said that Willow has many Wormian Bones which are small, irregular bones that are associated with OI and were NOT documented in any of her radiology reports from our accusing hospital.
A geneticist who specializes in Ehlers-Danlos Syndrome, an inherited connective tissue disorder, examined both me and Willow, and diagnosed us with EDS (which due to my past medical history I had suspected, but hadn’t been formally diagnosed with yet). He wrote a referral for Willow to start physical therapy and noted that he did not believe that Willow was abused. He also noted that he had strong concerns that Willow also has Osteogenesis Imperfecta.
In addition, I discussed metabolic bone disease with our pediatrician because Willow had every single indicator. Our pediatrician agreed and stated that Willow’s lab work matched up with the diagnosis.
Finally, on May 16, 2024, 131 days after being falsely accused of child abuse, we got the call that our CPS case had been closed as ‘unfounded’. Unfortunately, we are still waiting to hear if they are going to close our criminal case or not.
This experience has been the most traumatic, degrading, and horrifying experience of our lives. I wouldn’t wish this on even my worst enemy. I had to quit my job because Willow got kicked out of daycare due to us (at the time) not knowing what was wrong with her so the daycare was terrified to touch her. We fought like hell to get answers and help for our daughter. It really goes to show that you can do everything right as parents, but can still be falsely accused at any given moment.
I am incredibly grateful for the support of other families I have met (unfortunately) going through or who have been through the same experience of being falsely accused of abusing their children. We now have to try and pick up the pieces and start the healing process.”
Jenna’s Story first appeared on Parents Behind The Pinwheels
There are so many other families like Jenna’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.
