Tasha’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.
“I couldn’t wait to be a mom. I went from thinking I might not be able to have children to being blessed with two at one time.
My pregnancy was complicated. I was already a high-risk pregnancy due to having multiples, but on top of that, I had hyperemesis which required a continuous pump to manage and home health nursing care. I also had pre-eclampsia and had to be on different medications, including magnesium sulfate and steroids, to help prolong the pregnancy. With these medical interventions, I managed to carry the twins to 34 weeks + 6 days gestation.
After the twins were discharged from the hospital/NICU, I shared concerns with our pediatrician that they seemed fussier than what I thought was the norm. I was told it was probably colic, that they needed probiotics or they had reflux. Over the course of the next few weeks, the twins had around 8-10 appointments/ER visits with me bringing up my concerns about their fussiness, but was told I was just concerned as a new mom.
Then when the babies were 8 weeks old, one of the twins was once again unexplainably fussy so I brought him into the ER and found out the heartbreaking news… I was told my baby had multiple injuries/fractures. I was confused… how did my little baby have these injuries? It went from ‘good job mom’ to ‘what did you do to him?’ I explained that I didn’t do anything. I brought him in because I didn’t know what was wrong and instead I was falsely accused.
They had the other twin brought in who was also found to have multiple unexplained fractures. I had just taken the other twin to an ER visit a week and a half before for unexplained fussiness that was attributed to reflux once again… so how was this missed just a week and half earlier and how was I being blamed now?
I was interrogated with not a clue as to how my baby boys had so many injuries that had been overlooked. I explained to them over and over there was no child maltreatment by myself or my family. I even told them I was understanding of their initial investigation as I was a healthcare provider too, but I genuinely did not understand at that time what exactly was happening with my babies. All I knew was that there was no child maltreatment.
My beautiful twin baby boys, my miracles, my heart beats, were taken from me for something I didn’t do. My husband’s son who was 8 years old and lived full time with us corroborated that there was no abuse or maltreatment in our home and voiced wanting to come home, but he was also taken away. I was later fired from my job and unable to obtain another job in healthcare because of the allegations.
Almost 2 years later, the battle continues to regain custody of all 3 children. I have Ehlers Danlos Syndrome, a genetic condition that was suspected from my own primary care provider and was officially diagnosed last year. It is also believed my twins have inherited this condition, confirmed by other experts including a geneticist. In conjunction with this condition, my twins were found to have radiological findings of metabolic bone disease/brittle bones. We even had another child abuse pediatrician review the case who also concluded this was not a child maltreatment case. In addition, more injuries were found to have occurred after the twins’ removal from my home. Despite all of this evidence, the accusing child abuse pediatrician insisted this was abuse and my rights to my children were terminated to have my twins adopted.
We then had yet another expert who found that many of the twins’ fractures dated back to birth, during their hospitalization and even prenatally. We filed this expert’s report with the court, but it was ultimately denied without a hearing. In total, we have roughly 7 doctors stating this is not a child maltreatment case.
Our case is currently being appealed and we need help uncovering why we cannot get our kids back despite all of the evidence. We would never hurt our children. Please help us get our children back.”
Tasha’s Story first appeared on Parents Behind The Pinwheels
There are so many other families like Tasha’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.
