Itโ€™s Hearth Health Month! ๐Ÿ’—โค๏ธ๐Ÿ’š

Last Friday, February 1st marked the beginning of Heart Health Month and the kick off began with National Wear Red Day to raise awareness on this issue. Heart Health Education and Awareness has always been near and dear to me because I have a family history of heart related conditions/diseases including genetically inclined high cholesterol, congestive heart failure, and heart arrhythmia.

Raising and Caring for a Heart Warrior

This health issue takes on a whole other meaning as I (We) am now raising a Miracle Heart Warrior. Being Niaโ€™s mom has really increased my knowledge and awareness on the impact of congenital heart defects (CHD) to our everyday lives. Finding out Nia had a CHD initially felt like another dagger on our salted wound- especially with ominous news that our baby’s fate was pretty grim.

We held out a little faith and hope that just Maybe she didnโ€™t have a CHD which could possibly increase her slim (to none) survival rate Hearing at 29 weeks gestation, Nia indeed had a CHD was heart-breaking. For me, I thought wow she probably won’t stand a chance. Seeing her local amazing cardiologist for the first time was overwhelming as Nia initially was diagnosed with a atrial septal defect (ASD) and ventricular septal defect (VSD) which meant if (and big If) Nia survived she would need surgery within the first 3-4 months of life. Well God had another plan- as we all know now- her VSD magically/divinely disappeared. It no longer showed on her echocardiogram (images of the heart) at birth! ๐Ÿ™Œ๐Ÿพ๐Ÿ™Œ๐Ÿพ๐Ÿ™Œ๐Ÿพ๐Ÿ™Œ๐Ÿพ To see Nia pink on delivery day was and still is a magical visual moment forever in my heart and mind!

Since Nia has a un-repaired atrial septal defect (ASD)- hole in her heart and a leaky valve weโ€™ve spent our winters hibernating her from others because of the high risk of flu and RSV. I’ve written numerous times how a cold could be deadly for her- and yes it is true until her heart is fixed! We are blessed and thankful she was approved for Synagis again which is a very expensive RSV antibody shot, that will help her body better handle such a deadly virus if she contracted it. Praying though we never have to face this diagnosis… I am continuing to pump liquid gold- breastmilk into her. ๐Ÿ™Œ๐Ÿพ๐Ÿ˜Š

To Family and Friends of CHD Warrior Parents…

If you know someone that has a baby with a CHD please understand and respect their wishes If you get an invite to visit but you feel like you are coming down with a cold or getting over a cold to just stay home… Yes itโ€™s that serious! Donโ€™t judge them for all the soap and hand sanitizer they have around their house, handbags, or back pocket. They are being extra cautious because their precious cargo is even more special ๐Ÿ˜˜

If they wonโ€™t allow you to pick their baby up or visit be respectful too- as their doctorโ€™s have already scared them enough, and they may have been hospitalized unexpectedly 1 too many times already, If theyโ€™ve had an extended NICU or Cardiac ICU stay then they are more than likely traumatized by the clinic setting and the thought of returning unexpectedly. Help them to not have to be Mama or Papa Bear because if youโ€™ve met NICU and/or Heart Warrior Moms and Dads they are built a little different from other awesome moms and dads. ๐Ÿ˜‰โค๏ธ

Congenital Heart Defect Facts

Below are some facts on Niaโ€™s condition and CHD:

โƒ Ellis-van Creveld (EVC) babies have a 60-70 % chance of being born with a CHD which ranges from ASD, VSD, HLHS, and leaky valve (not all encompassing)

โƒ Babies with EVC have a restricted rib cage which complicates managing a CHD

โƒ According to research conducted by duPont Childrenโ€™s Hospital and the Clinic for Special Children in Lancaster, PA, managing babies with EVC and CHD shows that if heart surgery is delayed until approximately 2 years of age there are no mortalities

Additional Facts about babies with CHD

โƒ According to the Center for Disease Control, approximately 40,000 babies are born with a CHD every year

โƒ CHDs are a leading cause of birth defect-associated infant illness and death.

โƒ About 97% of babies born with a non-critical CHD are expected to survive to one year of age. About 95% of babies born with a non-critical CHD are expected to survive to 18 years of age. Thus, the population of people with CHDs is growing.

โƒ About 75% of babies born with a critical CHD are expected to survive to one year of age. About 69% of babies born with critical CHDs are expected to survive to 18 years of age.

Please help me/us raise awareness for Congenital Heart Defects (CHD) in babies!

For more information on raising heart health awareness see links below.

https://www.heart.org

https://www.cdc.gov/ncbddd/heartdefects/links.html

Cheers to February Heart Health Month!

Blessings!

ELS

Erica, Antoine, and Nia

The Best Pic We Could Get as a Family for National Wear Red Day and for Alpha Kappa Alpha Sorority (my sorority) Pink Goes Red! ๐Ÿ’—๐Ÿ’š๐Ÿ’—๐Ÿ’šโค๏ธ Nia was all over the place! ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Author: Nia's Journey

Mother of a Miracle Warrior Baby Girl! Her name is Nia Alexandria! Nia's Journey has given me a completely different perspective on life! I pray her journey blesses others along the way- follow me @nias_journey (Instagram) and www.niasjourney.com

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