Our Journey From Medical Misdiagnosis To The Present

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This September is National Hydrocephalus Awareness Month and I felt like it would be the right time for me to tell my family’s story.

Over a million people are currently diagnosed with Hydrocephalus. There are different types of this condition.

My son has Benign External Hydrocephalus of Infancy in which there is an abnormal build-up of cerebrospinal fluid (CSF) outside of the brain. Benign External Hydrocephalus is present at birth and may be caused by either events or influences that occur during fetal development, or genetic abnormalities, or a complication at birth. Acquired hydrocephalus develops at the time of birth or at some point afterward. This type of hydrocephalus can affect individuals of all ages and may be caused by a complication at birth or disease.

However, he was originally misdiagnosed and because of this my family has been through unimagined life changing and unexpected circumstances occurred.

In May 2015, because of that misdiagnosis, my children were taken from my husband and I.  My sons were placed into foster care for five months. Our family was railroaded by false accusations.

Doctors quickly gave an inaccurate diagnosis and that has greatly affected our lives every single day since.

It is vital for physicians to exercise due caution when their diagnosis will affect the child’s treatment and the way in which hospital staff and others will treat that child’s parents.  Now, I would like to raise awareness for cases in which a diagnosis of Hydrocephalus was not made, the medical consequences for the child and the impact it has had and continues to have on families.

The worst day of my life was when our children were wrongfully taken from us and put into foster care.

My heart broke as I watched my boys crying as they were taken.

Each day I missed my boys.

The silence of the house was deafening.

Charges of abuse were filed against my husband.

We had to hire one attorney after another hoping to find the one attorney who would defend his innocence, discover my son’s correct diagnosis, and give my husband a way to restore his good name.

My husband earned his Bachelor’s Degree in Criminal Justice and achieved a top secret clearance with our government and military.

When he had to leave his job with the government he felt betrayed and lost his faith in his lifelong icons of truth and justice.

We had to sell our house to pay the attorney’s fees.

We were blessed to have very large and generous families who readily provided their support. My husband and I, as well as my two boys continue to heal from the traumatizing events that all began with the physician’s failure to correctly diagnose my youngest son.

There were times when the loss of our children, the unbelievable accusations against my husband and the feeling that we were powerless to right the wrongs – were overwhelming.

But, we went through the most challenging events of our lives and it has made us stronger. Now, we can take our terrible situation and what we have learned, and help others in similar situations.  Our strength came from our faith, our prayer and the love and support of family and friends. Despite the extreme challenges of our circumstances we had to stay strong and not give up. We believed that a Miracle of Faith would happen.

I would like to raise public awareness about Medical Misdiagnoses, the delay of needed treatment, the life-altering impact on the family of the patient, and to help other families going through a similar ordeal.

 

 

Lorina Troy is a mother of two boys who lives in Austin, TX. She’s an advocate for families and an author. Her book, “Miracles of Faith,” follows the long harrowing journey her family was put through and can even be found in the White House, Texas Governor Greg Abbott’s Office and in Senator Ted Cruz’s Office. Miracles of Faith also sold out within the first week it was listed on Amazon. You can find more about her book here.  

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