How Heartbreak Turned Pain Into Purpose

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As I look back through my life, I realized that nothing that I had been through had prepared me for what happened in May of 2015.  After moving from California to Texas after purchasing my first home.  About a year into living there, I gave birth to my second child, a boy, who would later get sick about a month and a half into his life.

So, I did what every other parent would do, I took him to see his pediatrician, to our local urgent care, and to the children’s hospital within a few weeks of each other. Each visit netted the same result: we are told he had a stomach bug, sent us home and told us to give him Pedialyte.

It was after one of the many doctor’s visits that I remembered my baby’s head was measuring 2 weeks larger than normal in utero, a few weeks before he was born. Since his birth, his head continued to get larger and I couldn’t figure out why my baby was vomiting. Finally, at his four-month baby wellness check, the pediatrician recommended that we have images taken of his head, just to be sure he was okay. He was smiling and seemed to do well, so his pediatrician said that they would likely do an MRI of his head and send us home.  Like any other parent, I was incredibly nervous, but knew I had to do the best for my child.

The Children’s Hospital, after finding fluid on my son’s head on the MRI, immediately assumed he had been shaken, even though my medical records showed he had a larger head than normal. I was in shock and knew that he was misdiagnosed.  Let me be perfectly clear: my son was never shaken or injured. There was no evidence of abuse because my son was never abused.

I told the pediatric neurosurgeon at the hospital that my son was never hurt and asked him if this be could be a result of a medical condition we were as yet unaware of. The pediatric neurosurgeon told me yes; however, because he’s a baby and can’t tell us anything, we’re just going to go with abuse.  He then walked away, leaving us in shock, heartbroken from the misdiagnosis and his lack of professionalism.

Several months later, my attorney told me my two sons were being removed from me to be placed into the foster care system. I was completely devastated. My children had never spent a day, or even several hours without, ever.   That day was the worst day of my life.

At the time, my oldest son was only four years old, while my baby was only five months of age. The children were traumatized and as a direct result of this misdiagnosis, my oldest son lost twenty pounds in six weeks. His pediatrician wrote in his records that he was showing signs of sadness and depression from being separated from his biological parents. My baby also lost a significant amount of weight, and I was told that he would cry all day long in foster care. And the rules during this time were that I could only see my two children a mere 2 days a week, for two hours a day.  This went on for five months.

Even though five months might not seem like a long time, to mother like me, every minute felt like an eternity. My children are my world, and to not see their adorable smiles, and to not be able to take care of them and be their mother every day was heartbreaking.

Just when we thought it couldn’t get worse, my baby’s father was wrongfully accused and wrongfully charged with two felony counts of child abuse. The doctors just assumed that he hurt the baby; once again, they assumed that the fluid in my baby’s head was from being shaken. Explanations that our baby was never shaken fell on deaf ears; neither the doctors nor the hospital staff would listen.

After five months of torture, I was told that, since my oldest son lost a significant amount of weight, my children would be returned to me. I cried tears of joy after hearing this news.

Even though the boys returned home, our drama was far from over.  We had to hire three attorneys to fight for our innocence. The mounting attorney’s fees, medical expenses from my baby’s two neurological surgeries, losing our health insurance, and my son’s father lost his career after the accusations, we had exhausted all our savings and had to sell our home.

My third attorney went through all of my son’s medical records and found that my son suffered a significant complication at birth. Neither the hospital nor doctors told us anything about this. It was like I was in an alternate universe upon hearing this; my shock was incredible, and I didn’t understand why this truth was kept from us.

That attorney hired a medical expert and the medical expert confirmed, not only that my child had a complication at birth, but also that he has a life-threatening neurological condition called Benign External Hydrocephalus. That is the reason why my baby had to have two neurological surgeries by the time he was five months old.

In his first two and a half years of life, my son saw over twelve physicians, none of which diagnosed him correctly. Finally, with a clear diagnosis, I felt hurt, relief, and ready to get him the proper medical care based on the diagnosis. It was shortly after this that several months later, the charges against my son’s father were also dismissed. Then the cases were dismissed, and I felt like I could finally exhale, and we could have peace in our lives once again.

Healing, however, didn’t come easy for me.  My children inspired and motivated me to write a book to share our story, raise awareness, and hopefully help other children and families. In July 2018, I wrote and published my first book called Miracles of Faith.

Today, I’m writing my second book about the events that followed, about the healing process, and overcoming the wealth of fear and anxiety that came from the misdiagnosis.  Through my journey, I’ve also learned that I’m not alone in this situation.  From meetings with lawmakers in Texas and California, to speaking at the Capital building in Austin, Texas, to sharing my testimony at a legislative hearing with the House of Representatives Committee on Human Services, I’ve learned that this problem is far more pervasive than anyone would think.  I’ve been contacted by a multitude of families, all over the country, that have had their children removed from their homes due to a misdiagnosis. I’ve spoken to the Director of the National Hydrocephalus Association and more families are coming forward because their children also have Benign External Hydrocephalus and they’re being misdiagnosed with child abuse, too.

This is a fight we can’t afford to turn away from; it tears at the very fabric of the American family.  I am raising awareness and fighting for change so other families don’t have to go through what I did. I hope that someday there will be a Federal law that will enable the attorneys of parents and children to have the right to a second opinion. Because, when I asked for a second opinion, I was told no after my son’s misdiagnosis.

My heartbreaking experience was the event that led me to turn my pain into purpose, and to be there, uplift and encourage other people.  It has brought me a strength I never knew existed and the determination to help others in a way I never imagined.

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