You may or may not know that February is Heart Awareness Month. We don't usually get very personal on TLSF but I thought that it was only fitting that I tell my story (as briefly as possible). Over 38 years ago I was born as a "Blue Baby" with Tetralogy of Fallot, a Congential Heart Defect that involves four anatomical abnormalities of the heart. I had open heart surgery at age 4 at Riley Children's Hospital in Indianapolis. I wasn't able to run until after I was out of the hospital! Since, my repair I have not had any issues and went on to be a very active child that loved the outdoors! Cardiologists at Northwestern are amazed at my repair. As I became and adult I have become  proud of the fact that I have TOF and it has made me who I am today. I have never let having Tetralogy of Fallot hold me back or stop me from doing something.  I am now a healthy mom with 2 kids!

About two years ago I received an email from the wife of a college friend letting me know that she found out at 31 weeks pregnant that her child had Tetralogy of Fallot. She was terrified and scared of the unknown. Of course researching and reading what she found on the Internet made her even more scared! I was able to answer her questions and calm her fear a little. Open heart surgery is now done between 4-12 months old. I can only imagine what a parent feels seeing their child go through open heart surgery especially at 4 months old! Kate lives in Atlanta with your parents & siblings, Noah (6) and Ella (4).  Susan (Kate's mom) shares Kate's story with us!

 Kate on Surgery day.

TLSF: What do you want people to know about Kate?

Susan:  Kate is so special there are hardly the right words.  She was diagnosed when she was 30 weeks gestation with Tetralogy of Fallot.  Tetralogy is a combination of 4 heart defects including pulmonary stenosis, VSD (ventricular septal defect), an overriding aorta, and a thickening of the left ventricular wall.  This used to be called "blue baby" because baby's with Tetralogy would be born blue b/c of the lack of oxygen.  Kate was born as a 'pink tet', meaning she had enough oxygen getting through her blood that she never turned blue.  She was watched very closely the first weeks/months of her life to determine if surgery could wait, or if it needed to happen immediately.  She was able to wait until the optimal time for a baby to have open heart surgery which is around 10-15 lbs.  She had her open heart surgery where she was repaired completely at 4 months old.  She was back home in 3 days!  Truly remarkable.  Her scar is now healed and you'd never know she ever had any CHD's without looking at her ECHO's (and her scar, of course).

Happy Kate 2 days after surgery!!!

TLSF: How have Ella and Noah helped Kate with her CHD?

Susan: Noah and Ella both helped tremendously before and after her surgery in keeping germs away from her.  They never let anyone touch her, and they told everyone that she was their "baby Kate" and was having heart surgery to 'fix' her heart.  We told them that her heart made a swishy sound (because of the murmur), and that the Doctors were going to make it have a thumping sound like theirs.  That's how we explained it to them.  They were always helping Mommy and Daddy, and when she cried (which was dangerous b/c she could turn blue), they would sing to her, and she'd stop crying.  When driving in the car, if Kate cried, they would both sing "BA BA BA BAAAABY KAAAATE"...and she would stop.  It was so sweet, and they love her so much.  Ella calls Kate's scar her 'scarf' because she thinks it looks like a scarf.  They have many nicknames for Kate, they call her Baby Kate, Katsers, and KaterTot.

Ella, Kate and Noah.

TLSF: Anything else you want our readers to know about Kate?

Susan: After Kate's surgery, she had an ECHO showing that her heart was using an extra electrical pathway which meant that she could be developing Wolfe Parkinson White Syndrome.  After many prayers and a month later, it was gone.  She's truly remarkable.  With everything she's had, she's been at the top of the charts with how well she's done.  Her HEART is special, and SHE is special.

Kate with her loving parents, brother and sister.

TLSF: What is Kate's favorite activity?

Susan: Kate loves to color (with markers, unfortunately, not crayons!).  Thank goodness for the washable kind!

TLSF: What is Kate's favorite toy?

Susan: Kate's favorite toy is her bouncy ball.  She will put it between her knees and bounce around for hours.  Her face gets all red, and she gets super sweaty.  My sister said after watching a video of her on that ball, "Well, this is a testament to how good her heart is, b/c she's given it a major stress test!"

Kate is now 21 months. She wears her "heart"shirt that her aunt designed for her proudly!

I wanted to share my picks for sweet Kate!

 

Crayola Mini Stampers Markers, Pink Chicken Charlotte Dress, Birdies Big Girl Dress, Giddy Giddy Bird Pouch, Dotty Dolly, Livie & Luca Orange Spring shoes

Kate and I have never met in person but we share a special bond. Our scares are our "badges of courage" that are a daily reminder of our strength!

Do you know someone with Tetralogy of Fallot? Share their story with us!

2 Comments