One Philadelphia mom is using her creativity to not only keep babies fashionable, but to generate awareness about congenital heart disease (CHD). MyMommyVents spoke with Amber Bowie, the mom behind Mackenzie Madison of Philadelphia, to learn more about congenital heart disease, how it personally affected her family, and what you can do to help.
Khloe is one of Amber’s adorable daughters, her older sister Kennedy Madison is 2. Khloe’s bright eyes and chubby cheeks don’t give any hint at what she’s been through in her short life. At just seven months old, she’s already had surgery to repair her tiny heart.
Amber found out about Khloe’s condition just 20 weeks into her pregnancy.
“I went in for my 20 week ultrasound, which is…where gender can also be revealed. We were so excited to find out the gender, we were hoping for a boy. I thought the only shock would be hearing “It’s a girl!” but I knew something was wrong, very wrong. The ultrasound technician took about an hour to gather all of the pictures needed. And then we were told to wait for the Perinatal doctor.”
The doctor delivered the news in a cold way.
“She 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. She didn’t know much about the defect, but she knew I was a week away from the legal abortion limit. She highly suggested an aminocentesis test, 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? Why do I need to abort my baby? So many questions ran through my mind. I didn’t make it out of the hospital before I broke down into tears.”
Amber decided against aminocentesis, and decided to have a Harmony test done to determine Khloe’s risk for Down’s Syndrome instead.
“The results came back in 7 days and she didn’t have Downs, but a pediatric cardiologist confirmed she had an Atrioventricular (AV) canal defect and would need heart surgery. We didn’t speak about it much after it was all confirmed. I didn’t tell many people about her defect. As a family, we were so unsure of the future but we decided not to worry and just continue on as positive as possible. I also didn’t want to ruin my pregnancy joy. I strongly believe your baby in utero feels your emotions. I didn’t want to stress my baby.”
Amber and her boyfriend didn’t know much about congenital heart disease, but they vowed to learn, for Khloe.
“I knew absolutely nothing about CHD before our diagnosis. Not a thing. When we sat down with the cardiologist, everything sounded so foreign. I left the meeting even more confused than before I walked in. Of course I went online and did my research. That is really where I learned more about CHD. I found so many communities of Moms who had been through or were currently going through the heart journey. Speaking with those women scared me and settled me all at the same time.”
Online support helped Amber come to terms with congenital heart disease and how it would affect Khloe. She was admitted to the Children’s Hospital of Philadelphia for surgey.
“The first few days after Khloe’s surgery were mentally exhausting. Khloe was admitted, for the second time, to the Children’s Hospital of Philadelphia two weeks prior to surgery. When she was 2 months old, we found out that she had electrical issues with her heart, which caused it to beat extremely fast (in the 200s). This constant high rate lessened her heart function. Going into heart surgery with a bad functioning heart wasn’t the ideal situation for her. Because of the stress on her heart, she had a very tough recovery. At one point the doctors weren’t sure if her heart would recover. She was sedated for a week after surgery and I sat by her bedside day and night, just staring at her. Praying she’d pull through. We spent 4 weeks post surgery in the Intensive Care Unit. Most heart babies are sent home 3-5 days after surgery.”
Inspired by her battle, Khloe’s grandmother made bracelets to support her.
“My mom actually made me and the girls these beaded bracelets while Khloe was in surgery. She called them Khloe’s Heart bracelets. I wore that bracelet everyday… we all did. It symbolized Khloe’s struggles. Khloe’s nurses’ always asked about the bracelets, and one suggested we should sell them to raise money along with Khloe’s GoFundMe.”
Khloe’s condition requires round the clock care, so Amber isn’t able to work. After gaining support with Khloe’s Heart Bracelets, she and her mother opened an Etsy shop, Mackenzie Madison of Philadelphia.
“I had a shop a few years ago in college and I always said I wanted to open another. That’s how MMofPhilly was born! Mackenzie Madison of Philadelphia was inspired by my beautiful daughters, Kennedy Madison & Khloe Mackenzie. Since giving birth to Khloe, I couldn’t hold a job because she needs care 24/7. I knew I needed to find a way to help support my family.”
Khloe’s dad has been there from the start, supporting the family as well as Amber’s creative endeavors.
“My boyfriend has truly been amazing through all of this. He stepped up to the plate when we needed him most. But I am a working girl. I like to stay busy. I love to create.”
Mackenzie Madison of Philadelphia offers Khloe’s Heart Bracelets and other charm jewelry, along with t-shirts and headbands.
“Our best selling items are of course Khloe’s Heart Bracelets and we have this adorable mommy and me pineapple printed headband set that everyone loves!”
Help support Amber and Khloe with a purchase from MMofPhilly.com. A portion of each purchase will be donated to the cardiac unit the Children’s Hospital of Philadelphia. Like Mackenzie Madison on Facebook, or follow @MMofPhilly on Instagram and Twitter.
A special thanks to Amber for allowing me to share your family’s story. All pictures are courtesy of Amber Bowie and Mackenzie Madison of Philadelphia.