Hydrocephalus

Born With Hole In Heart And Hydrocephalus

I was born two months early.

I was born with hydrocephalus and a hole in my heart. At nine months old, I had a stroke, at the hospital in Norway.

They'd never seen any one as young as me ever have a stroke. The doctors left me for three days before they did anything. By then I was in and out of consciousness. They didn't think that I would survive the stroke.

The stroke changed my hydrocephalus so that the ventricles in my brain don't change size - they've stayed small. The small ventricles in my brain make it challenging for my doctors to figure out what is going on with me as the brain scans show nothing wrong.

Problem is, my brain scans look normal even when there's something wrong. In my life, I've had nine brain surgeries and the longest I've gone with the same shunt was twenty-one years.

Over the last few months, I've been having some pain near my heart, so I've had some different tests run on my heart. One test doesn't show my whole heart clearly enough, so the doctors aren't exactly sure what's going on with my heart. They think some of the pain is due to acid reflux.

At the same time the pain in the my heart began, I noticed a bit of pain in my shoulders as well as some pain in my abdomen. The doctors suspect I tore the rotator cuff in both of my shoulders.

The Medical Mystery Tour continues.

by an anonymous user; Published on July 01, 2012
Filed under: Prematurity,  Birth Defects,  Hydrocephalus,  Stroke,  Congenital Heart Defects,  Chronic Illness,  The Medical Mystery Tour,  Pain Disorders
1 Comment
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You have no right

Everyone is entitled to their own opinion. That doesn't mean you get to share it with me.

I am the best parent for my daughters.  So unless you:


  • chose to have open heart surgery to get pregnant

  • waited for test results to see if you passed your heart defect to your unborn daughter

  • looked at available adoption situations and said yes to the drug-addicted baby

  • listened to a neurosurgeon tell you your daughter has hydrocephalus

  • listened to speech therapist tell you daughter may never speak

  • watched your 5 month old daughter have a seizure

  • set an appointment with your local MRDD school to see if your daughter will go there


Then you tell me what you would do as parent.  No wait you can't because you have no right unless you are Amelia, Evelyn or Ingrid's mother.

You are not their mother.

I am.

by 3princessmama; Published on September 15, 2010
Filed under: Bullshit,  Things That Suck,  Adoption,  Parenting,  Special Needs Parenting,  Pediatric Illness,  Pregnancy,  High Risk Pregnancy,  Relationships,  Hydrocephalus,  Seizure Disorder,  EYE OF THE MOTHERFUCKING TIGER,  Anger
4 Comments
A note about commenting: It only takes moments to comment but makes a world of difference to an author to know they are not alone: They're with the Band! Please share your support here!