Parenting Pointers - Rare Illnesses and Foster Care (Interview)

 Lorina Troy is on a mission to change federal law to ensure children with rare illnesses aren't just diagnosed as child abuse victims. 

Lorina's youngest son was born with benign hydrocephalus due to an injury at birth (here's an article from when he was very first separated). Yet instead of getting the care he needed, his parents were accused of physical abuse and both he and his brother were put in foster care for 5 months– and he still received no care for his illness! Now Lorina is suing the hospital and CPS to ensure this never happens again to any other mother. She's also worked recently with state lawmakers and changed Texas state law to require a second opinion before forced removal– and she's working to make that state law in Nevada, Illinois and many more places!

I had a chance to interview her to learn more.

Can you share a little more about your personal journey?

My children mean the world to me. My son, Jason, has a life-threatening neurological condition called benign external hydrocephalus. The children’s hospital and the doctors ignored his medical records and instead chose to misdiagnose my son with abuse. Upon further examination, we received an opinion by a pediatrician and child neurologist who concluded there were no findings associated with an abused head injury, therefore there was no evidence of abuse.

At just five months old he was taken, along with his brother, and placed in foster care for 150 days where he still received no medical care for his condition. My sons were moved around several times in foster care. And because they were moved around he missed scheduled appointments with his Neurologist and a scheduled appointment for an MRI. I was also not able to take Jason for a second opinion or see a neurologist because they would not allow me to take him to see other doctors while in foster care. Yes, they wrongfully charged their father with two felonies and it took his attorney two and a half years to have his case dismissed. The criminal defense attorney assisted in helping us find the correct diagnosis for my son. 

Our family went through such a horrible situation because of the wrongful accusations and misdiagnosis. It took about two and a half years for the cases to be dismissed, for my son to be correctly diagnosed and for everything to finally start getting better.

In 2018, I took time to heal from the emotional trauma of my children being taken from me and I wrote a memoir called, Miracles of Faith, which goes deeper into what happened and the impact on our family. It has taken years to heal from the emotional trauma caused by my children being taken by law enforcement and CPS. My children are healing and JJ is now correctly diagnosed but I still worry about other families who may be going through the same thing. 

Our experience led me into the advocacy world where I met other parents who were accused of the same. Some had lost their children and been incarcerated on felony abuse charges and their child? Ideally with family but usually in foster care. 

I have also met with over 10 lawmakers in various states across the U.S. to share our story, raise awareness and help other families and I was involved in the state of Texas passing a law that requires a second opinion before forceful removal. Both of my sons' civil rights were violated under the United States Constitution when they were illegally taken from me. I want justice for my sons and for the children of other families. 

Now, we’re in federal court, suing the medical and county workers who played a role in the separation. I hope that our federal lawsuit can also help set a precedent and  a federal law be passed to help protect children and families from medical misdiagnosis and emotionally traumatic and unlawful removals. 

I was also briefly featured in the Netflix documentary called Take Care of Maya, an amazing, heart-felt and emotional documentary that shares the experience of a family who dealt with the misdiagnosis of their daughter. The documentary is available in the U.S. and many countries worldwide. At the end of the documentary several families share a little about how they went through a similar situation in various states across the U.S. My family’s case, and the other cases in the film, show how babies can’t speak and advocate for themselves. And it seems like medical experts that are not affiliated with the state are often not hired to find the correct diagnosis. If they are affiliated, it seems like they are more likely to be misdiagnosed with abuse.

Many families are contacting me and medical experts are confirming that their children also have medical conditions, but they are also misdiagnosing their children with abuse. 

Why might children with rare illnesses get misdiagnosed as being victims of child abuse? 

Because when they are babies and little they can’t speak and advocate for themselves. And it seems like medical experts that are not affiliated with the state are often not hired to find the correct diagnosis.  If they are affiliated, it seems like they are more likely to be misdiagnosed with abuse. This is happening to so many children and families across our nation. When the state has children see their associates and medical experts that are paid by them, they can be more likely to say it’s abuse when it isn’t. As opposed to an independent non-affiliated physician, the odds of them automatically saying it’s abuse can be lower because they are not affiliated. CPS (the state) usually has child abuse pediatricians in children’s hospitals. They’re usually affiliated through contracts with the children’s hospitals. And it’s easier for these doctors to “misdiagnose” children with abuse when they’re affiliated with the state rather than a medical expert that’s not affiliated with the state. Also, doctors seem to air way on the side of caution and could say everything is abuse when it isn’t to not be held accountable if it is abuse and they missed it.

What specific changes to federal law are you proposing to ensure that children with rare illnesses receive proper medical care and aren't unjustly separated from their families?

I shared my testimony at a legislative hearing and shared our story with lawmakers and the news and media to raise awareness and to help have a law passed in Texas that would allow parents a second opinion before an unlawful and emotionally traumatic removal of children.

I hope this law can become a federal law to help families across the nation.

If a family does find themselves in this situation, how can they advocate for the truth of what their children really need?

You need to request all medical records and images, hire a medical expert to give your child an objective check-up, and hire an attorney to fight for them. You must document everything. In Take Care of Maya, a document we briefly participated in, it was clear that the only way Maya stood a chance was because of her mother’s incredible note-taking. So, document everything: dates, names, times, what was said. You also have to take care of yourself emotionally and help your children process this intense trauma while also pushing for justice. It’s truly awful. I am praying for every family going through this. I know it’s hard but your children need you. Stay strong, never give up, and keep fighting for the truth! My son was misdiagnosed with abuse and my children were illegally taken from me in 2015. Our family has waited for justice for 9 years. The system is broken. And we hope and pray for change.