Every year, 100,000 babies don't make it to their first birthday because of CHD.
Evangeline Shalom Smith | Heart Warrior of the Week

Evangeline Shalom Smith, who is described as courageous, brave, and bold by her parents, is our Heart Warrior of the Week!

Evangeline’s parents were missionaries in the Ukraine for the duration of the pregnancy. Due to most of the pregnancy taking place in a 3rd world country, they didn’t receive up-to-date medical care and were unaware of her heart condition before she was born. 

They returned home to the U.S. for the delivery – Evie was born on January 16th, 2008 - and the family celebrated when they had a perfectly healthy and chunky 9lb baby girl born two weeks past her due date. That celebration soon turned into worry when their baby girl began showing signs of respiratory distress at 10 days old. They immediately knew something wasn’t right and that she needed to be seen by a doctor right away.  This decision didn’t come a moment too soon, as Evie crashed right as they arrived to the ER. Had they arrived even just a few minutes later, they could have lost her.

Evie was diagnosed with transposition of the great arteries (d-TGA) and her battle with congenital heart disease was under way in a flash. After being life-flighted by helicopter to MUSC, she underwent a cath procedure to open a space in her heart to allow oxygenation of blood until her open-heart surgery could be scheduled.  Three days later, she underwent an arterial switch procedure which is an open-heart surgery where doctors switch the arteries of the heart that are transposed.  She also endured additional minor surgeries in her first two years of life for lung biopsies due to extensive damage from multiple prolonged intubations.

After the initial 4 week stay, Evie spent the next two years in and out of hospitals with reactive airway disease, congestive heart failure, asthma and GERD. Despite all she has been through, she doesn’t require any medications and faces limited restrictions – she tires more easily than other kids, and cannot do certain strenuous exercises that exert blood pressure and strain the heart (like rock climbing or tug-of-war or weight lifting) - but she lives a very full, active, and healthy life!

It is up in the air if she will need further surgeries down the road. The procedure that doctors used to repair her broken heart is a relatively new one; the first to undergo it are only now in their 30’s, so doctors are just now seeing how things hold up into adulthood.  Evie is monitored closely with annual echocardiograms and time will tell if she needs further repairs as her heart grows and compensates for the restructuring that was done during her open-heart surgery. 

When asked if there are any worries or challenges they face as a CHD Family, Evie’s Mom, Mandy, said the following: 

Like any parent of a CHD kid, it is tempting to worry about their condition being an inhibitor to a full life.  However, we have seen so many answers to prayer in her young life that this is the hope we continue to cling to - that God has her in the palm of his hand and his purposes for her life will not be altered.  Trusting each of our 7 children to the Lord has challenges in different ways!  With Evie, it is just a bit more profound.  She’s been exposed to a lot in her young life and it makes her wise beyond her years.
Some days I just want to wrap her in bubble wrap….but she’s seen and experienced too much.  She’s had heart friends pass away.  You lose an innocence when you’ve been through so much while so young. This is real life – raw, unedited and real, despite her fragile age.
These life-lessons that I would so love to pack-away until I think Evie is old enough to "handle," are not really mine to box up for later.  The tender-heartedness that God is growing in her is something intentional that he is going to build on. Perhaps this compassion that she developed early in life will set her on a trajectory to minister people with disabilities. Maybe she will one day be a Pediatric Cardiologist. Or counsel people in grief. Or parent a child with a handicap. 
We are invited as mothers to come alongside God in the people he is creating our children to be and assist as developers in his orchestrated plan. It’s not ours to direct.  God is growing these little hearts (literally and figuratively) and making something beautiful from the brokenness! 

 

What inspires Mandy about her Heart Warrior? She loves how brave and bold Evie is about her heart.  Mandy says:

We’ve always been very open about everything she’s been through.  She’s proud of her scar and not embarrassed to tell her story.  She knows that God spared her life for a purpose and she shares bravely about how he healed her and answered our prayers.  It’s her story to tell and she does so beautifully! 

Our daughter’s middle name is “shalom” which means “peace.”  In the early days of her diagnosis, I was so troubled by this name we had given her when her early life was anything BUT peaceful.  However, God has used her life to teach us that peace is not the absence of a storm, but his presence with us through the deepest, darkest nights.  We have waded some deep waters with our Evie girl, and our faith in God and his closeness through every trial has been a shalom of peace in the hardest of circumstances.

While I would never in a million years have chosen this road of pain for our child, we look back now and know that God has worked goodness into even the hardest of seasons.  Some of our dearest friendships have come through the heart community - the “club” we’d never choose to join, but one that has become so dear to us!  Pictured here is Evie with her best friend, Maggie.  Maggie’s mom and I met through our blogs when our babies were young and fragile.  What grew was an unlikely friendship that has spanned 10 years, overseas moves, and time.  Maggie and Evie both have complex hearts and have been through more than most of us will in a lifetime.  They share such a special bond!  Best buddies.  Heart Warriors! 

 

You can keep up with Evie’s story on their family blog at www.perfectshalom.com

 

About Transposition of the Great Arteries (d-TGA)

 

Anatomy: The aorta connects to the right ventricle and the pulmonary artery to left ventricle, just the opposite of a normal anatomy.

Complications: Because of this abnormal connection, de-oxygenated blood is re-circulated to the body before it has a chance to pick up oxygen from the lungs. At the same time, oxygen-rich blood is continuously being pumped from the heart to the lungs in a cyclical pattern, never dispersing the oxygenated blood throughout the body.  This leaves the body with dangerously low oxygen levels.

Most d-TGA babies are born with a small hole in between their left and right ventricles, after a few hours or days of life, this hole closes on its own. This hole is actually a critical component for some babies with TGA as it allows oxygen-poor blood to mix with oxygen-rich blood, enabling the body to receive small levels of oxygen. Often times, a balloon procedure is performed to enlarge or create this hole to improve the baby’s levels. Doctors go in through an artery in the leg and use a small medical instrument to create a larger hole between the ventricles.

Symptoms: Blue color of the skin (cyanosis), shortness of breath, lack of appetite, poor weight gain or weight loss.

Treatment: Often times, a balloon procedure via catheterization is performed to enlarge or create the above mentioned hole shortly after birth to improve the baby’s oxygen levels. The repair for TGA is an open-heart surgery where doctors surgically place the aorta and pulmonary valve in their proper positions.

Prevalence: d-TGA accounts for approximately 5% of all congenital heart defects, affecting boys more than girls at a rate of 3:1. It occurs in 2-5 out of 10,000 live births worldwide.

Comments

Mandy

Mandy said:

Thanks so much for including Evies story! Love that you are spreading awareness about CHDs!

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