Stehanie Romer, HLHS, Hypoplastic Left Heart Syndrome, Congenital Heart Disease, CHD, Congenitl Heart Defect, disability housing, crisis, CHD Legacy, Advocate, Activist, Survivor, Warrior, Heart Warrior, Fontan, Crisis Cicatrix, Author, Podcast, Julie Mae Morefield, Nina Kash, Andrew Paukstitus, disability, Sarah Miller, Katie Greene, Caitlyn MacKay, Samantha Davis, Becca Atherton, Amanda Harper, Kayla, Tiffany Wasiuk, Jasmine Gilgosch, Amber McMillan

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January 4, 2016 at 8:01 PM   (Edit)

Hi there,

I read your blog, “building my castle”. I think you are totally amazing, and truly admire you. It's sounds like you have and still going through some difficult experience, and had your share of bastards (unbelievable…)
I came across your blog through a youtube vid on congential heart diseases. all I can say is that your existence, and most of all your attitude, truly gives hope 
would be glad to hear about your updates, I also watched your video about taking care of a girl with a congenital heart disease and was deeply moved. you are one of a kind. take care!
Alon

Christelle Roy

April 14, 2016 at 9:30 PM   (Edit)

Wow. This was really difficult to read, no where near as difficult as it must have been to live through it though. The only thing I ever got made fun of when I was a kid was my weight (I was always heavy) but that wasn't even relentless or constant. I only found out about my heart defect when I was 26 years old and have my surgeries at the end of 2014. I am 28 now and looking back it all makes sense. The way I struggled in gym class, the way I couldn't run like the other kids, how I felt out of breath for no reason. In retrospect I understand it was because every single minute of every single day my heart was fighting to keep me alive and we all had no idea. I just thought I was a “fat kid” that sucked at sports but it was much more complex than that. My congenital heart defect is uncommon and there aren't many studies done or facts known so living as an adult is uncharted territory in a way. Living is scary but it is also amazing. Thank you for putting yourself out there and sharing xox

Beth W

July 19, 2016 at 10:03 PM   (Edit)

Amazing to read Stephanie. I remember how many times you would come home crying, telling me the horrible awful things that kids would say and me trying to comfort you. I also remember dealing with a lot of ignorance from adults with your CHD. I am sorry you are still dealing with the ignorance of people. You are truly an amazing young lady and will conquer this ignorance and hate with your inspirational words. You keep on keeping on and spreading your words. God brought my Baby Tuffy into this world to shake it up….and that you are doing. Love you with all my heart:-)

Beth Williams

January 13, 2017 at 1:10 PM   (Edit)

Stephanie, that is so beautifully written. I love the humor and the raw truth:-) Thank you for your support to parents and A HUGE thank you for your kind words about me. I wasn’t always sure the way I handled things was the “right” way….trying to “pretend” that all was good and we just went on with life. I never let your CHD define you..that is not who you were. I have a TON of pictures of you, none with you in the hospitals full of wires and tubes (except when you were born). Those images are engrained in my head forever. You were a beautiful, fun, silly, funny, wonderful child who just wanted to have fun:-) I am glad you see what I tried to do, by staying Positive was beneficial, and hide the pain from you. Don’t think I am not crying now!! I am so proud of you. I love you, you are truly my inspiration:-) And as we always say “Keep on Keeping on”

Christine

August 15, 2016 at 6:26 PM   (Edit)

Your amazing….heart hugs <3
Christine DeLugan

Unknown

February 18, 2016 at 8:36 PM   (Edit)

I love this so much. Very real. Very raw. & Just in case nobody, including yourself, has reminded you lately, You are amazing. You are strong willed,even when you think your not. My 4 year old has HLHS and I have felt alot of these emotions over the years. “What did I sign us up for once I made the decision to bring Max into the world with half of his heart practically not there” The is our life. And I wouldn't have it any other way. Wishing you more smiles than there are clouds in the sky pretty girl. Thank you for sharing! -Lauryn

Larry Spain

Jan 14, 2017·

hannahsbigheart.blogspot.com 

I really enjoyed your post. Thank you for writing it. I struggled with the same dilemma when my eight year old daughter was diagnosed with Atrial Septal Defect (ASD) 11/2016 and we were told that she required open hear surgery. I looked for children’s books that might offer some insight as to how to explain these things with my daughter, but I was only able to find a couple and they did not truly address her situation. Well (long story short) my daughter had open heart surgery in December 2016 and she is make a wonderful recovery. Now she and I are co-writing a children’s book together (about her open heart surgery experience) to help other children prepare for heart surgery. I am searching for other CHD parents and advocates to network and collaborate with, if anyone is interested please contact me at hannahsbigheart@gmail.com

Mommaroo

Feb 18, 2016·

www.blogger.com/profile/05827807905692599601

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I have a 3 year old Heterotaxy and CHD child. I agree with what you have said here. As a parent of a little one I want to know that my son will be well cared for and thought of for his entire life. You are all heroes!!
Did you know that Children's Hospital of Philadelphia just started an adult CHD survivorship program?? It looks like you live west coast, but this may be of interest to you in some way. They are a very compassionate group that cares a lot about adult CHD survivors. Best wishes!!! So glad to have received your friend request on Facebook. I know you have had a tough life…I have lived through some of the same traumas, but without CHD adding to the fun. Thank you for being an open book for those of us just starting on this journey.

Alon

Jan 4, 2016·

www.blogger.com/profile/01237340860962259454

Hi there,

I read your blog, “building my castle”. I think you are totally amazing, and truly admire you. It's sounds like you have and still going through some difficult experience, and had your share of bastards (unbelievable…)
I came across your blog through a youtube vid on congential heart diseases. all I can say is that your existence, and most of all your attitude, truly gives hope 
would be glad to hear about your updates,
Alon