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The A’Vayah Story – Living With A Congenital Heart Defect

Babies

Just over a year ago I was contacted by Ashanike to capture her beautiful growing belly in a maternity session. Due to unfortunate circumstances that day never came. Over the course of the last 6 months, I  have been touched by this family with their incredible story. I have had the honor and opportunity to get to know them, share some of their journey, and capture some beautiful images of their warrior princess.

I asked Ashanike to share her daughter A’Vayah’s story and this is what she wrote…

“I wanted to share my sweet girl’s story and how she now lives with half a heart. My daughter A’Vayah was diagnosed with a rare and complex congenital heart defect.

She was born on January 2nd, 2014 at San Antonio Medical Center six weeks premature and was given a 30% chance of living. On January 17th, 2014 and at only 4 lbs. 11 oz, she underwent her first open heart surgery. Due to various complications, ten days later she went back into the operating room to have her open heart surgery redone.

After battling feeding troubles, we later had to make a decision to have a Gastronomy tube  placed.

From the day of her birth until March 26th, 2014 we remained in the hospital fighting the CHD battle.

July 23rd, was the day of her third surgery, the bi-directional Glenn procedure. This marked the making of her tiny heart becoming a half of a heart.

Although her CHDjourney has only begun and at the age of three she will have to undergo another heart surgery, we are thankful every day for her life. She has beat many odds and has accomplished a great deal in her short little life despite all of the challenges set before her.

Sadly, each year, 40,000 more US babies will be born with Congential Heart Defects (CHD), 8,000 of them won’t live to see their first birthday.

In only a year, my little A’Vayah has undergone, 3 heart surgeries, 1 G-Tube surgery, 93 days in the hospital, and one heart catheterization.  But, thanks to medical advances and amazing doctors, she is here and able to celebrate her 1st birthday with half a heart on January 3, 2015, with the love of my family and friends.” – Ashanike Creighton

Avayah’s…6 months

Central-Texas-Baby-Photographer

Avayah…9 months

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A”Vayah’s first Christmas

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A’Vayah and her beautiful mommy, Ashanike

Congential heart defect 4

And last but not least…

Happy First Birthday A’Vayah!

Cake smash Cake-smash-1-blog

You can follow A’Vayah’s story here.

A’Vayah also made the local news. Featured here with her mommy and her pediatric cardiothoracic surgeon Dr. Syed Adil Husain.

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January 5, 2015

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