Brain Damage with CHD: Further Studies

Updated: Oct 13, 2019

In my late twenties I began learning about the damage CHD does to our brains. After interviewing and meeting hundreds of CHD Adults I was beginning to see a lot of patterns, and especially a lot of verbal and mental similarities that I also saw in myself. I called our forgetfullness "CHD Fail" and made YouTube videos about it. We would laugh about our messiness, how much we talk about 50 different subjects in 5 minutes, being known as the person who is "very direct" or "blunt" and having many signs of things like ADHD, OCD, high anxiety, depression, etc.

I was so fascinated by this and felt, "hey maybe there's finally some answers to the things I've always felt were weird about me mentally." Sure enough, there was! I googled and decided to go to a Neuropsychologist. Best thing I ever did! My life completely changed from there.

I was diagnosed with severe complex PTSD from brain damage from long-term medical, physical, emotional, and mental trauma. They did brain scans, long days of testing, and found out I actually have a pretty big permanent hole in my brain because of the amount of trauma I have been through. This affects the way my blood flows through my brain, what areas my blood gets to and how quickly. This affects how we deal (or don't deal) with stress, surprises, fear, triggers from PTSD, and more.

That was four years ago and I am now completely different and never thought I could be where I am today. However, in 2017 & 2018 I had a series of TIA's (mini-strokes), one of which was an extremely traumatizing experience, and a few complex migraines that I feel changed me a little.. or a lot .. I really don't know. That's part of the problem lol. I haven't been back to the Neuropsychologist since my favorite doctor left, but it is on my list of things to do because I never felt a doctor understand me more in my life than my previous Neuropsychologist.

To read more about my Neuropsych appointments and learning if I have ADHD, read my next blog:

ADHD & Executive Functioning in CHD Patients

Depending on the severity of your trauma - it is very important to get the help you need.

Please read and share my blogs and videos, as it can truly save someone's life!

Feel free to check out my YouTube videos & previous article below:

CHDFAIL Video #1

CHDFAIL Video #2

Headaches, Migraines & Owning Your Own Body

Video 3: Learning Disabilities & CHD w/ HLHS / TGA & Truncus Arteriosus Survivors

Video 2: They Think We're Craaaazyyyy!! (lol) w/ HLHS / TGA & Truncus Arteriosus Survivors

386 views0 comments

Recent Posts

See All
1st Generation Parents
First generation parents of complex and single ventricle congenital heart disease and defect survivors. They are the soldiers who taught us how to fight. Thank you.
Heart Caths & Warrior Blood
Heart catheterizations are a minor invasive procedure to check out hearts to see from the inside. It is comforting to be able to see a heart cath lab before you have a catherization to ease your mind. Stephanie Romer writes about her experiences.
What to Tell A CHD Child...
Keeping the innocence. How much and what should I tell my baby or child with congenital heart disease or defect. Parents, advocates, and doctors can discuss this together as well. Stephanie Romer shares her thoughts on this.
CHD Brain & ADHD
CHD Brain damage comes out in many forms - Executive Functioning issues that can look like and be diagnosed as ADHD, Learning Disabilities, Behavioral Issues, and more...Stephanie Romer writes about her experiences.
34 yr old HLHS Survivor
HLHS warrior turns 34 years old. Hypoplastic Left Heart Syndrome. Congenital heart disease survivor. Stephanie Romer's 34th Birthday - 2019.
Life with 5 CHD's
Stephanie Romer Living and loving life with five congenital heart defects. Hypoplastic Left Heart Syndrome, Transposition of the great arteries, atrial septal defect, ventricular septal defect, mitral valve stenosis
Learning Disabilities & CHD
CHD and Learning disability...Stephanie Romer writes about her experiences and thoughts.
Illness or Drug Addict
Treated like a drug addict in the Emergency Room for being young with a chronic, invisible illness. Stephanie Romer writes about her experiences.
Stress Tests
With CHD we have to go through constant testing. Stress tests is one of those. Living with Congenital Heart Disease and HLHS - Hypoplastic Left Heart Syndrome - makes it more difficult. Stephanie Romer writes about her experiences.
Oldest HLHS Survivor Making Waves
Stephanie Romer story by Project Heart living with half of a heart, twice the fight. Living with HLHS, TGA, ASD, VSD, MVS. Advice for parents and congenital heart disease and defect survivors, patients, doctors, cardiologist.
Show More

Do you have a coach to help guide you through your individual or family struggles?

Chronic Illness Coaching: 

Illness | Wellness | Trauma

  • Facebook
  • Twitter
  • YouTube
  • Instagram

Please see Terms & Conditions for all privacy policies and disclosures.