Our Heart Warrior

A love story that starts with a broken heart.

Read his story from the beginning


Here’s my boy’s story to date (November 11, 2012) in simple terms.  Simple…huh?

Evan’s future was foretold when I was still pregnant with him.  We found out about 3 months before he was due to arrive, that he would be born with a congenital heart defect and cleft lip and palate.

The doctor’s believed his heart and face would require surgical intervention but were hopeful that all could be corrected after he was born.

Evan was born on January 22, 2012.  He was taken from my arms and rushed to the Children’s Medical Center in Dallas for immediate evaluation for his heart.

Four hours after he was born was when we were told some very difficult news.

Evan’s heart was much sicker than they had anticipated.  His heart formed incorrectly due to a very rare syndrome called “Heterotaxy Syndrome.”  One in four million babies are born with this condition in the world…..Evan is one of them.  This syndrome is caused when the body is forming and organs like the heart, stomach, intestines, are on the wrong side of the body or are missing all together.

A normal heart has 4 chambers and main blood vessels that to go the body and to the lungs.  There are also vessels that go back to the heart.

Evan’s heart isn’t normal at all.  He has one single chamber – essentially – having a big hold in the middle of his heart.  The main blood vessels that go to and from this heart are not in the correct spot.  He has extra ones and he’s missing some.

He has had 2 heart surgeries to date.  He will have to have another heart surgery when he is between the ages of 3-5 years old.  His heart surgeries don’t “repair” his heart they just extend his life.  Many children with his kind of heart may need a heart transplant later in life.  But, we hope that Evan’s heart will give him many, many more years.

His cleft lip and palate is also one of the more severe types.  His “cleft” – which essentially means – “split” – is on both sides of his face (his upper lip) and the roof of his mouth (his palate).  He will have his first surgery to correct his cleft lip on November 15th.  His palate will be repaired around 6 months after this lip repair.  He will will further surgeries to help with his jaw, his teeth and his gums when he is around 7-9 years old by using bone marrow from his hip to reform his palate, another one for his nose when he is teenager, and any further surgeries if he has a difficult time speaking.  He will require major orthodontic care throughout life – braces, jaw realignment.

Evan’s two diagnosis – his heart and his cleft lip – make eating very difficult.  If you think about babies, they are born to know how to suck on a bottle.  But, when they suck on a bottle, it is like they are running a marathon.  It is very hard on the heart and it makes them work very hard.

So, Evan has been fed through a feeding tube since he was born.  There is a tube that goes through his nose, down his esophagus, and into his stomach.  We use a mechanical pump to send food through the tube.  He will be transitioning to a tube that goes directly into his stomach in the next week – this will require another surgery.

Now that he’s older, Evan is just now learning to take a bottle like a normal baby.  He is learning to eat baby food and small snacks like Cheerios – like any baby his age should do. But, he has to learn how to do all of this since he didn’t eat normally for the first 9 months of his life.

This requires us to go to speech and feeding therapy several times a week.  We work closely with his therapist to teach Evan the correct way to eat food.

Evan has spent nearly 4 months of his life in the hospital because of surgeries and recoveries.  Because he wasn’t able to move around like a normal baby would do at home, he is behind on things called “gross and fine motor” skills.  He works with physical therapist several times a month to help him do things like crawl, turn his head, reach for toys, etc.

Despite all that you are reading, Evan is an extremely special boy with a very full life.  He loves to play with his sister and dance to his Daddy’s guitar playing.  He smiles all day long.  He loves to snuggle with his blankie.  He is living a very blessed life.

And we are so thankful for him.

 

 

Posts about his journey can be read in this section – with the most recent post at the top. Please scroll down to the bottom of the page to find past posts.

If you are just finding me, maybe you stumbled upon my blog just because.  Maybe someone sent you to pray for our family.  Maybe you are seeking comfort, hope, respite in a personal journey you are on.  Regardless of why you are here…I’m so glad you are.  I hope you find useful information, an escape from your everyday, or someone to cry with.

Thank you for sharing this journey with us.