Diagnosed at Birth

Matthew

Story Written by Author/Self

Acquired hydrocephalusOn November 10, 1980, my mom had to have an emergency c-section. The doctor that was filling in for my mom’s ob-gyn, who was on vacation, didn’t read her medical chart stating that she had a tilted uterus. So the doctor that was filling in tried giving her a normal delivery, with my mother pushing for hours. After seeing that I was going into fetal distress, they ordered an emergency c-section.

When I was delivered I was having seizures. They ran tests and discovered that I had congenital hydrocephalus due to fluid build-up caused by all four ventricles in the brain being filled with blood. They told my mom that they needed to put in a ventriculoperitoneal (VP) shunt, but that they couldn’t until the bleeding stopped. My mom’s original ob-gyn came back from vacation after finding out what happened and was in tears, apologizing for what took place and telling my mom that if she wanted to sue, he would go to court on her behalf. So my mom talked with her mom about the incident and the option that was given to her. My grandmother was a woman of faith and asked my mom, “Do you want Matthew to live and be healthy or sue for millions of dollars?” My mom said she wanted her son to be healed, so my grandmother said, “Then we shall pray.”

The doctors gave my mom and dad bad news that I was born with not only hydrocephalus but cerebral palsy, and that they would notice it when I got older. That they should give me up for adoption, since my mom was so young. That I would be a vegetable, not living past the age of 7. But my mom refused to give me up for adoption and said she would do whatever she needed to, even if it was only for a short while, to be with her son.

So after 2 weeks of a lot of people praying for me, the bleeding stopped and they were able to put in my first shunt at 2 weeks old. I had no complications afterwards and no need for surgery, except tube lengthening.

In 1995, I was wrestling with a friend of mine and, since I had no complications up to that point, I didn’t think about the risks of what I was doing. When my friend got me into a headlock, he squeezed my neck so hard that it broke the old shunt tubing. I was running into things and not acting right, so when I got home my mom took me into the local doctor’s office. We waited for hours to see a doctor. When my mom saw I was getting worse, she told the nurse, “I am leaving and taking my son to the hospital.” The doctor happened to be walking across the room and agreed it would be best, so she took me to Port Huron Hospital to get looked at. The did an x-ray and saw that the tubing was broken. Since they didn’t do that kind of surgery, they told my mom that I needed to go to Detroit and that she could have me taken by helicopter, ambulance or take me herself. I told her to take me, so she did. When we got there they put me right into a room so the lights wouldn’t hurt my eyes and took me right in for emergency surgery. They only replaced the tubing since they didn’t think I needed a new shunt.

But then, on February 5, 1996, I was dusting my mom’s wooden tables and furniture with Pledge and I started acting really tired and not wanting to do anything. So, this time my mom asked if I needed to go to doctor. I said no, but she noticed something wasn’t right so took me straight to Detroit. At that time they said the shunt was blocked and they had to put in a whole new system. This time they didn’t need to do emergency surgery and everything went good. I have had this shunt now for 19 years and counting, with no complications. But I did learn through a rehabilitation center that I was diagnosed with a reading disability, chronic organic brain syndrome, and generalized anxiety disorder. I also have really bad short term memory. But I do not have cerebral palsy and my mom believes I was healed of it, because she said it was documented that I did have it. I do still go see my original neurosurgeon every year for a check-up, even though he is a pediatric neurosurgeon for Detroit Children’s Hospital. My original pediatrician that I was seeing when I was a child went out of practice, I later found out. I kind of wish he hadn’t so I could let him see how I am today.

I am now married – since 2002 – with 5 kids, working and doing things that doctors thought back then would not be possible. I give all the Glory to God.

Well I don’t know if this is to long of a story, but I hope this helps.

Thanks for reading my story.


Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: communications@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Visit our Advocacy Action Center.