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.
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Oh my, this is an amazing story. A friend of mine had a son who was born with a congenital heart problem and has had surgery three times since his birth. He’s a happy, thriving 12 year old. I admire Amber’s strength and tenacity! And those bracelets and headbands are adorable! Wishing her all the best and praying that beautiful Khloe has a long and happy life ahead of her!
Great post! I learned a lot. I love how she is using her creativity to show love and support her daughter… Beautiful
Aw! What a beautiful baby girl! I pray she has a speedy recovery! Thanks for sharing her story.
What a beautiful little girl! I’m sorry she has to go through this at such a young age. The Etsy shop items are adorable.
This is a heart wrenching albeit, inspiring story. Abundant blessings to the entire family.
Praying for you Khloe!! What a strong princess!!
What a beautiful little baby girl! Holding the whole family in my thoughts and prayers. It’s inspiring to see a mother pull light out of what is a tough situation.
Such a beauty and thanks so much for sharing Khloe’s story!
This made me tear up. I went through something similar with my firstborn. They told me that she had high chances of Down Syndrome and to abort her. Needless to say, I didn’t and she was born perfectly healthy. May God heal and bless sweet little Khloe on her journey!!! Thanks for sharing xoxo.
This was so moving. It was a great way to shed light on a condition that most don’t think about affecting children. And these beautiful little girls are so precious! It is hard to see like that but she looks so happy and peaceful. I love the bows too. So cute. Great story!
Sad to hear that her doctor delivered the heart condition news in such a cold way.
Praying her little ones has a healthy life ahead!
Thank you for sharing her storry. I am from philly and planning on reaching out to her now.
Very inspiring story! I’ll be paying a visit to the shop soon!
My prayers are with this family! Thank God Khloe is doing well! I will definitely check out Khloe’s Heart bracelets.
Wow Tiffany, thank you so very much for sharing this powerful story. I will definitely be sharing this and encouraging others (especially moms) to help support. What beautiful babies Kennedy and Khloe are1
She is so pretty. Great story. I don’t get too emotional, but I definitely got teary. My nephew was born with a cleft pallet and both lungs collapsed within the first month of existence. Never underestimate the power of prayer. He’s going into first grade next week and you would never be able to tell he’s had more surgeries and stitches than I can even imagine. I hope she has a speedy recovery.
Your tears are understandable. She is a beautiful child, as you’ve said, very cute. Those big eyes are incredible. And it’s wonderful that both her parents are doing a wonderful job helping her out.
You’re right about Khloe’s bright eyes and chubby cheeks not giving away her pain. Going through surgery at the very beginning stages of life will make her into a true survivor.
My twin sister just found out that her daughter also has CHD. I like how you pointed out that there are support groups and communities to receive more help and education. I also loved the pictures you posted of Khole, she’s precious! My sister is going to need to find a good pediatric cardiologist.