One Philadelphia mom is using her creativity to not only keep babies fashionable, but to generate awareness about congenital heart disease\u00a0 (CHD). MyMommyVents spoke with Amber Bowie, the mom behind Mackenzie Madison of Philadelphia<\/a>, to learn more about congenital heart disease, how it personally affected her family, and what you can do to help.<\/p>\n

Khloe is one of Amber\u2019s adorable daughters, her older sister Kennedy Madison is 2. Khloe\u2019s bright eyes and chubby cheeks don\u2019t give any hint at what she\u2019s been through in her short life. At just\u00a0 seven months old, she\u2019s\u00a0 already had surgery to repair her tiny heart.<\/p>\n

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Amber found out about Khloe\u2019s condition just 20 weeks into her pregnancy.<\/p>\n

\u201cI went in for my 20 week ultrasound, which is\u2026where gender can also be revealed.\u00a0 We were so excited to find out the gender, we were hoping for a boy.\u00a0 I thought the only shock would be hearing \u201cIt\u2019s a girl!\u201d but I knew something was wrong, very wrong.\u00a0 The ultrasound technician took about an hour to gather all of the pictures needed.\u00a0 And then we were told to wait for the Perinatal doctor.\u201d<\/p>\n

The doctor delivered the news in a cold way.<\/p>\n

\u201cShe called us into her office, extremely insensitive, and told us that she thought our baby girl had a serious heart defect that was linked to Down Syndrome.\u00a0 She didn\u2019t know much about the defect, but she knew I was a week away from the legal abortion limit. She highly suggested an aminocentesis test<\/a>, but the odds were way too risky for me, especially without confirmation. Was she sure my baby had a hole in her heart? Was she sure she may have Downs?\u00a0 Why do I need to abort my baby?\u00a0 So many questions ran through my mind.\u00a0 I didn\u2019t make it out of the hospital before I broke down into tears.\u201d<\/p>\n

Amber decided against aminocentesis, and decided to have a Harmony test<\/a> done to determine Khloe\u2019s risk for Down\u2019s Syndrome instead.<\/p>\n

\u201cThe results came back in 7 days and she didn\u2019t have Downs, but a pediatric cardiologist confirmed she had an Atrioventricular\u00a0(AV)\u00a0canal defect<\/a> and would need heart surgery.\u00a0 We didn\u2019t speak about it much after it was all confirmed.\u00a0 I didn\u2019t tell many people about her defect.\u00a0 As a family, we were so unsure of the future but we decided not to worry and just continue on as positive as possible.\u00a0 I also didn\u2019t want to ruin my pregnancy joy. I strongly believe your baby in utero feels your emotions.\u00a0 I didn\u2019t want to stress my baby.\u201d<\/p>\n

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Amber and her boyfriend didn\u2019t know much about congenital heart disease, but they vowed to learn, for Khloe.<\/p>\n

\u201cI knew absolutely nothing about CHD before our diagnosis.\u00a0 Not a thing.\u00a0 When we sat down with the cardiologist, everything sounded so foreign. I left the meeting even more confused than before I walked in.\u00a0 Of course I went online and did my research.\u00a0 That is really where I learned more about CHD.\u00a0 I found so many communities of Moms who had been through or were currently going through the heart journey.\u00a0 Speaking with those women scared me and settled me all at the same time.\u201d<\/p>\n

Online support helped Amber come to terms with congenital heart disease and how it would affect Khloe. She was admitted to the Children\u2019s Hospital of Philadelphia for surgey.<\/p>\n

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\u201cThe first few days after Khloe\u2019s surgery were mentally exhausting.\u00a0 Khloe was admitted, for the second time, to the Children\u2019s Hospital of Philadelphia two weeks prior to surgery.\u00a0 When she was\u00a0 2 months old, we found out that she had electrical issues with her heart, which caused it to beat extremely fast (in the 200s).\u00a0 This constant high rate lessened her heart function.\u00a0 Going into heart surgery with a bad functioning heart wasn\u2019t the ideal situation for her. Because of the stress on her heart, she had a very tough recovery.\u00a0 At one point the doctors weren\u2019t sure if her heart would recover.\u00a0 She was sedated for a week after surgery and I sat by her bedside day and night, just staring at her. Praying she\u2019d pull through.\u00a0 We spent 4 weeks post surgery in the Intensive Care Unit.\u00a0 Most heart babies are sent home 3-5 days after surgery.\u201d<\/p>\n

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Inspired by her battle, Khloe\u2019s grandmother made bracelets to support her.<\/p>\n

\u201cMy mom actually made me and the girls these beaded bracelets while Khloe was in surgery.\u00a0 She called them Khloe\u2019s Heart bracelets. I wore that bracelet everyday\u2026 we all did. It symbolized Khloe\u2019s struggles. Khloe\u2019s nurses\u2019 always asked about the bracelets, and one suggested we should sell them to raise money along with Khloe\u2019s GoFundMe.\u201d<\/p>\n

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Khloe\u2019s condition requires round the clock care, so Amber isn\u2019t able to work. After gaining support with Khloe\u2019s Heart Bracelets, she and her mother opened an Etsy shop, Mackenzie Madison of Philadelphia<\/a>.<\/p>\n

\u201cI had a shop a few years ago in college and I always said I wanted to open another. That\u2019s how MMofPhilly was born! Mackenzie Madison of Philadelphia was inspired by my beautiful daughters, Kennedy Madison & Khloe Mackenzie.\u00a0 Since giving birth to Khloe, I couldn\u2019t hold a job because she needs care 24\/7. I knew I needed to find a way to help support my family.\u201d<\/p>\n

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Khloe\u2019s dad has been there from the start, supporting the family as well as Amber\u2019s creative endeavors.<\/p>\n

\u201cMy boyfriend has truly been amazing through all of this. He stepped up to the plate when we needed him most.\u00a0 But I am a working girl. I like to stay busy. I love to create.\u201d<\/p>\n

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Mackenzie Madison of Philadelphia offers Khloe\u2019s Heart Bracelets and other charm jewelry, along with t-shirts and headbands.<\/p>\n

\u201cOur best selling items are of course Khloe\u2019s Heart Bracelets and we have this adorable mommy and me pineapple printed headband set that everyone loves!\u201d<\/p>\n

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Help support Amber and Khloe with a purchase from MMofPhilly.com<\/a>. A portion of each purchase will be donated to the cardiac unit the Children\u2019s Hospital of Philadelphia. Like Mackenzie Madison on Facebook<\/a>, or follow @MMofPhilly on Instagram and Twitter.<\/p>\n

A special thanks to Amber for allowing me to share your family\u2019s story. All pictures are courtesy of Amber Bowie\u00a0and Mackenzie Madison of Philadelphia. <\/em>
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