Brain Development in CHD babies

Although I am very grateful for the endless amount of resources CHD Parents and children have now,

I would be lying if I didn't admit it hurts a little that we didn't get the same treatment.

Click Above Photo for video! (my video thing isn't working)

Credit: Thank you to Sisters By Heart for sharing this video! <3

After seeing this post, I wanted to turn my Facebook post into a quick blog.

This video is such an amazing, beautiful addition they have now to help sick children!

Although I am very grateful for the endless amount of resources CHD Parents and children have now, I would be lying if I didn't admit it hurts a little that we didn't get the same treatment.

For many reasons in the early stages of our brain development as infants and very very sick children we did not have people like this wonderful man to to hold us. As a result, we as CHD adults have a lot more mental issues because we never got held or loved like this. They didn't treat us very human like back then, their goal was strictly focused on keeping us alive. I have heard that at least 100 times from parents, doctors, and nurses.

The truth is: We need EXTRA love and EXTRA touch to attempt to make up for all of the neglect our brains are already recording, or to interfere with the neglect or abandonment we feel in an incubator or being tied down to a hospital bed with no human contact.

Instead, we just sat in an incubator hooked up to ivs, machines, tied down to hospital beds, and in what I used to call "the cage", with no human contact because they were afraid of getting us more sick. What this does to a child's brain is way too long to write here but some of it will be in my book.

Human touch and connecting to a human even if it's not our parents and ends up being random people like this amazing guy or nurses and doctors, is CRUICIAL to the development of a child's brain. But like I said before, they were still afraid of us in the 80s so they didn't touch us as much as a baby needs to be touched and held and talked to for its development.

I love everything they do for children now and it's also a weird type of sad feeling for all of us who never got all these amazing things that seem like common sense that they didn't apply in the 60s, 70s, and 80s.

But Im very thankful Im here to talk about it at least and see all the amazing developments they have for the see if she children to help their brains develop better than ours did. ❤

Some of the positives of being disconnected from human connection is it makes you ruthlessly reliant on yourself because your brain wires in a way that tells yourself you are the only one you can depend on because there's no one else there for you, and therefore a different level of independent and "I can do this by myself" way of life, more so than "normal" toddlers, children, and adults.

I've done SO much research and personal work on this issue if you are interested in writing, making a webinar, video, or podcast about this. Neurodevelopment fascinates me! I was honored to speak on the Neurodevelopment of CHD babies at a conference last year at Johns Hopkins.❤

*Always credit your sources!!*

40 عرض0 تعليق
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.