How To Help Raise Awareness for Congenital Heart Defects

Did you know that it’s Congenital Heart Defect Week? There is so much awareness that needs to be built up, as Nanette from Heart Baby Home shares with us today.
Congenital Heart Defects
Do you remember being almost 16 years old? High school. Driver’s Ed. Boys! When I was nearly 16, my oldest sister had her first baby.

Dad came home with pictures. My sister’s baby was amazing—so tiny and lanky. He had those dark blue, baby eyes and fuzzy pink skin. Dad said he had a soft cry—like he hadn’t quite figured out his voice. He liked to be held. I remember wishing I could hold him.

A week later, he turned blue and they rushed him to the hospital. He was flown to the children’s hospital near my house for emergency heart surgery. I wasn’t privy to all the details at the time. I remember being happy that my sister and her husband were suddenly in town. I had no idea what she was going through. Her baby died a few days later.

Nearly two decades later, I finally understood. I had just given birth (6 weeks early) to twins, Angel and Seraph. It was Summer, and my sister and her husband came down to visit my girls in the ICUs. Angel was at University hospital learning how to eat. Seraph was at Children’s hospital awaiting heart surgery.

There’s a pathway in a fetus’s heart called the PDA (Patent Ductus Arteriosus). An open PDA allows even a defective heart to function for 3-8 days. This gives the baby a few more days to grow before needing heart surgery. My sister’s baby had spent those precious days at home. Seraph spent those days hooked up to IVs and monitors.

My husband and I walked alongside Seraph’s glass bed to the Operating Room doors. It was like taking your baby in for immunization shots without knowing if she would survive them. My hope faltered. In the last few steps, doubts crept in and I couldn’t stand the thought that I might lose her without saying goodbye. So, I leaned in close and told Seraph that no matter what happened, she’d always be mine.

In the waiting room, my thoughts returned to my sister. She had sat in those chairs; waited for news that everything was alright. I hadn’t known to comfort her; hadn’t seen what was coming.

Seraph and Angel are three years old now. Since their birth, I’ve met many “heart moms”—moms with babies who have congenital heart defects. They feel like sisters, too: the pregnant mom who just found out her unborn daughter has Hypoplastic Left Heart Syndrome (HLHS), the mom who spent Christmas in the hospital because her heart baby wasn’t well enough for discharge, the mom waiting for her baby’s heart transplant, the mom who’s baby died of an undetected CHD while nursing, and many more.

We cry for each other. We cheer for each other. We feel each other’s fears. But, it isn’t enough. Congenital heart defects affect 1 in 100 babies born. How many babies will be born into your neighborhood this year? into your extended family? Doctors still don’t know what causes CHDs. February 7th-14th is CHD awareness week.

4 Ways To Support Congenital Heart Defect Awareness

1. Send THIS Pulse/oximeter link to your pregnant friends. A pulse/ox screening can detect major heart defects before a newborn leaves the hospital. The test is painless and inexpensive. It saves lives.
2. Donate your time, resources, money—even small donations really help. Ask your HR rep at work about matching donations; contact your school/PTA/ extended family/church group to suggest it as a service project. Support research, medical financial aid, or comfort for families dealing with CHDs through one of these trusted organizations:

a. Children’s Heart Foundation
b. March of Dimes
c. Ronald McDonald House Charities
d. Make a Wish Foundation
e. Your local children’s hospital – check their website for a list of needed items

3. Become an organ donor. Growing up, I had weird ideas about organ donation. By the time I had to check the box on my license, I had firmly decided against donating. Then I read about Taylor Storch and Nicholas Green who saved so many with their final gifts of life. Talk to your family about organ donation and make sure they understand your desire to give those final gifts of life, too.

4. Change your profile pictures to hearts and quote random CHD facts on facebook /twitter/your blog. Oh yes, I did just say that! It may seem silly, but your tweet could inspire the pulse/ox tests that saves a newborn; your post may motivate the next great surgical mind to study hearts. [When Seraph was diagnosed with a CHD, I cried and I worried and I struggled to keep it together for my other kids. The following February I started hearing facts about congenital heart defects during CHD awareness week. Other moms were watching their baby struggle in the ICU just like me–hundreds of thousands of moms. It wasn’t OK. I started drawing images for HeartBabyHome–a resource for families dealing with CHDs.Those little facebook facts spurred me into action!] You can get your CHD facts on THIS facebook page or from the March of Dimes website.

Commit to doing at least one of these before the end of the day! Together we can become a little less oblivious and a little more prepared!

More From Our How To Series

Check out some of the posts our SITStahs have published previously!

About the Author

Nanette loves reading books and eating dried apricots. Between fixing meals and drawing up meds, she draws heart illustrations, codes and manages websites, types up game reviews under the strict direction of her only son, and copy-edits manuscripts. She is forever teaching her five children the numerous applications of the golden rule: “do unto others as you would have them do unto you.” (Though this occasionally deteriorates into repeating the phrase “stop fighting” above the noise until no one else is talking.)

Late at night, when all five kids are snug in their beds, she likes to fall into a good mystery novel in a scalding hot bath and pretend sleep is optional. You can read more about Nanette on her website or follow her on twitter @HeartBabyHome.

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About Alina Thomas

Alina is a Virginia wedding photographer based out of Lynchburg, VA. She has a passion for arts and design, and strives to express it through her work. She is creative at heart and loves nothing more than sharing her knowledge in photography with other Virginia wedding photographers on her blog each week. Alina loves being a new mom to her first-born and spending time with her husband who helps her run her businesses. Please feel free to follow her on: Facebook, Twitter, Instagram, Pinterest or Google+.
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  1. says

    Wonderful blog! I found it while browsing on Yahoo News.
    Do you have any suggestions on how to get listed
    in Yahoo News? I’ve been trying for a while but I never seem to get there! Cheers

  2. Kate says

    Good post. It’s so important to raise awareness about Congenital Heart Defect and all the ways you can help. Thanks for sharing.

  3. says

    That is so sweet about “heart moms”…you understand each other! I know the feeling of feeling conneted to someone because you face the same challenges.

  4. says

    I’m so glad your kids are healthy, and thanks for writing this piece. We lost a baby halfway through my first pregnancy to HPLH. It was a choice we made based on the odds and the information given to us. A devastating choice, but one we made based on what we were told our baby would have to go through if she made it at all. I have 2 healthy kids now, but I mourn my first one and carry a little piece of her around in my heart.

  5. says

    Thank you Thank you thank you for this story. My son just celebrated his 6 yr “heart day” anniversary yesterday. He was 3 months old when he had his surgery and 1 wk old when he was diagnosed with a VSD. I truly loved the first part of your story, when you were younger. I never even thought of how my sibling felt or what they thought 6 yrs ago while all this was going on. A friend and I are currently working on getting people in the Northwest involved. Some day I would like to be able to bring things to families in hospitals to bring a smile to their face, the child’s face or even any siblings of the sick child. Anyways, thank you for bringing awareness. My voice is still pretty small on my blog so it is great to see a bigger voice spread the word!

  6. says

    What an educational and moving post. One of my closest friends has a heart defect – they didn’t find it until she was 5 and she has had a pacemaker ever since (she’s 26 now).

    Thank you for sharing all of the ways that people can help and raise awareness.

  7. says

    Thank you for sharing your story. It’s so important to raise awareness about Congenital Heart Defect and all the ways you can help.

  8. says

    I’m so sad for your sister, and so proud of you that even in your own terror, you remembered her, thought about her pain. And I’m very very glad your Angel and Seraph are three now and thriving.

  9. Kathryn says

    Thank you for raising awareness for our heart babies. My baby is now a 13 year old. his hypertrophic cardiomyopathy is challenging but he’s doing great. We were lucky, his defect was found at 5 days because we were still in the hospital. Thanks for sharing your story.

  10. says

    I have a friend who is a heart mommy! She and her son are so courageous and joyful…. such an inspiration!

  11. says

    Wow what a moving piece….I know what you mean you can only understand things once you have your own children and the heart ache your sister must of gone through I cannot imagine. I will say a little prayer for baby

    Laura x