A Family Devastated: Medical Misdiagnosis And The Lessons Learned

In May 2015, Lorina Troy experienced one of the most devastating events a parent can go through: her children were removed from their home and placed in foster care. Lorina had two sons, one four years old and one five months old. The five-month-old, JJ, had been having issues with vomiting a lot and had a somewhat enlarged head. This eventually led to a misdiagnosis of child abuse and child welfare system removing the children. It took 5 months to regain custody of her sons and two and a half years to get JJ the correct medical diagnosis of Benign External Hydrocephalus, a condition where cerebrospinal fluid builds up in the cranium. 

Lorina’s story is far from typical, but children being removed from homes by Child Protective Services (CPS) isn’t. It happens every day. What exactly should you do if it happened to you?

Remain calm! It is a very emotional thing to have a child placed into protective custody by CPS and it is understandable that most parents lose their cool when this happens. However, you have a better chance of getting your child back if you stay calm. Don’t argue with the investigator or make a scene. This won’t help your case and your behaviors will be reported to the judge. Instead, do your best to remain calm, provide necessary information to the investigator and obtain as much information from the investigator as possible.

Provide the investigator with names of friends or family members that can take your child. If CPS decides that your child cannot stay with you in your home, the child will be taken to a CPS facility if there are no friends or family that can take the child. If your child is being removed, give the CPS investigator a list of friends or family the investigator can call to take your child until the investigation is complete. The person taking your child does not have to be related to you. It can be a friend, neighbor, teacher, church pastor or anyone else that you feel comfortable with to care for your child temporarily. The person must be able to pass a background investigation so it is important to provide the investigator with several people just in case your first choice cannot pass background.

Find out what you need to do to get your child back into your care. The CPS investigator is required to explain to you why the child is being taken from you. Don’t settle for an explanation of “we think your child was abused” or “your child is not safe with you.” Ask the investigator specifically why your child is being removed. Is it that your home isn’t safe? Are they concerned about drug use or domestic violence in the home? Make the investigator give you a specific reason as to why your child is being taken and ask them to give you some guidance on what you can do to get your child back. While you may not agree with the investigator’s allegations, you should consider addressing the concerns of the investigator before you go to Court. Addressing the investigator’s concerns early will help you get your child back faster.

Get visitation set up with your child before the investigator leaves your home. It may be a few days before you see a judge to get visitation established with your child. Demand that the CPS investigator set up visitation for you and your child before the CPS investigator leaves your home with the child. You are entitled to a minimum of one hour per week with your child. Make sure the investigator has something set up for you to see your child.

Talk to a lawyer. Getting solid legal advice about your CPS case from the very beginning is essential to having your children returned to your care. A lawyer knowledgeable in the dependency system can help address the concerns of the CPS investigator, determine what you need to do to have your child returned to you and may even be able to keep your case out of court. The moment CPS becomes involved in your life, you should have an attorney on your side.

Attend your appointments. If CPS takes your child, you will be given a court date. It is imperative that you attend court on the day the investigator tells you to be there. If the investigator asks you to attend meetings or sets up visitation for you, it is extremely important that you attend. This information will be reported to the judge and could affect the speed with which your children are returned to you.

“Family reunification services” are the means by which parents get back custody of their children. Basically, after removal, the social worker will come up with a “case plan” to remedy the family’s issues that resulted in CPS involvement. For instance, if the children were removed because of domestic violence in the home, the parents’ case plan might include:

  • domestic violence prevention courses
  • parenting classes, and
  • conjoint therapy for the parents to discuss their issues with a counselor

Typically, the social worker refers the parents to the service providers, and it’s up to the parents to enroll in and complete the services. How the parents do in reunification services is one of the most important factors in determining whether they regain custody. As for Lorina, she now works at raising awareness of child misdiagnosis and Hydrocephalus. She lobbies lawmakers, advocates for legal changes, and talks to the press to get her and other parents’ experiences more exposure. She has written a book about her family’s journey through the medical and legal system, called Miracles of Faith.