Submitted Stories

Makenna Lynn


On August 27, 2015 our daughter Makenna Lynn was born. She was born at 39w, a tiny little thing (5lb 1oz 18") but perfectly healthy, or so we thought. We had gotten 3 ultrasounds while I was pregnant due to her being small, but they ended up concluding everything was fine and she was just a small baby.. never spotting the large VSD.

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On the 4th May 1989 my daughter Claire was born in Port Elizabeth with Asplenia syndrome - I was told she would not survive - today after 3 open heart operations, one of which was the fontane by Prof Kingsley and months in and out of hospital with arithmia and infections.

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James Wayne Hart


James Wayne Hart was born 06/08/15 with multiple heart defects, the most serious being very rare double outlet right ventricle meaning both main arteries of the heart are coming from the blue blood side.

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Haley Elizabeth


Meet Haley Elizabeth :) When Haley was born her brother, dad and I were so overjoyed with excitement, after nine months of waiting we finally had our little princess in our arms to kiss and to love. The excitement quickly turned to disbelief, heartache and confusion when we were told at 2 days old we were being referred to a cardiologist specialist.

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David was born on June 6 of 2013. He was born full term and very healthy. At the beginning he wasn’t eating very well and we still had to do an ultrasound on his heart because we needed to make sure everything was well from what they saw on the previous ultrasounds... at one day old they did an ultrasound on his heart and found out he had a heart defect right there they intubated him and flew him over to Vegas...

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I'm sure most parents will tell you that things are easier the second time around - and in our case that was what we expected with our second son, Ethan.

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My husband and I went to our routine OB appointment in May 2010. An ultrasound was done to check the development of the baby and hopefully determine the gender. We were told that they could not see all four chambers of the heart.

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On October 22, 2006 my husband and I welcomed our first little miracle into this world. Keith William was born on time and under the presumption that he was completely healthy; with the exception of a minor heart murmur.

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Isabelle Ellis was born in February of 2005 with a complex set of heart defects that made her chance of survival non-existent without a series of life-saving surgeries, the first of which was performed on Isabelle in that March.

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Our daughter is 28 months. And when she was born we thought she was a healthy little girl. But 4 months later we had to life flight her down to children's mercy because she had a gagging reflux so bad that her oxygen level would go down.

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My fiance, Jason, and I had a baby boy, Peyton. He was born October 19 2007. After our first sonogram, we knew there was an problem, but they didn't elaborate until the next one. We learned when I was about 2 months pregnant that Peyton had Congenital Heart Disease.

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On April 9, 2009 my sister, Kathryn Braun, gave birth to a beautiful baby girl, Amelia Ryelle, weighing 6lbs 12oz. She was a thriving infant consuming 3 to 4 ounces at a time and gaining weight. We never thought anything was wrong with her and neither did her family practice physician. As a couple of weeks went by, friends and family commented that Mimi's skin looked gray and dusky.

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My name is Tyler Boyles and my wife's name is Jenna. On July 6 2009 we gave birth to our second son Porter Lee Beckham Boyles he was 6 lbs 12ozs. We had an over night stay and everything seemed textbook. After a week or so of being home we noticed our little man wasn't eating well.

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I have a 2 1/2 month old son, Brody who was born with Marfans Syndrome. This condition has long fingers and toes, really tall lanky people. It also has a heart problem - his aortic root is growing faster than what it should plus he has a pretty severe arrhythmia.

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We are just beginning a long and emotional journey. I am 27 weeks pregnant with our second child, a little girl. After our routine ultrasound in July, we were referred to a perinatalogist in order to discover the nature of an extra cavity next to the baby’s heart.

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When my daughter was a baby I was told that she had a hole in her heart, but that it was small and nothing to worry about. Well, when she turned 18 she became pregnant and the OBGYN didn't like the sound of her heart and her first echo was performed.

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