Catherine: TGA, 1989 England


I was born 23rd December 1989 in Hampshire England.

My parents didn't know there was anything wrong with me until they started having problems with me feeding. at only a few weeks old they diagnosed me with CHD. I have dextrocarida, multiple asds and vsds, pulmonary stenosis and transposed greater arteries.

I can only imagine how hard it was for them to process. I had my first surgery at 9 weeks old I believe it was to temporally mend my heart, when I was strong enough I had the first part of the Fontan operation when I was 2 years old and at the age of 7 I had the second part done.

When I was 10 I was diagnosed with a brain tumour and epilepsy. I was put on medication to try and control this. I have no memories of my child hood due to the fits I was having, but what I can remember is how happy I was.


As I grew up I was more aware of my conditions. I went through a phase of (why me) but I soon snapped out of that. I realised I couldn't waste my life and I was determined to have as normal life as possible.

At the age of 18 i had my tumour removed and my fits ceased from that day.

For me the hardest part of having CHD is being told you can't have children because the risk is too high.

This broke me and I have had to learn to deal with this.

If I was to give one piece of advice, live your life and don't let anyone stop you from doing what you want.

This worked for me, I now have a wonderful husband and 2 beautiful step sons. To date, no more heart surgeries. I hope this helps someone.

Note from Stephanie: The UK and US have different spellings of words and some minor differences in the way we write. Out of respect for writers and the different cultures we come from, I keep the writing as you sent it to me, from your words. <3



132 عرض0 تعليق

أحدث منشورات

عرض الكل
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.