Choice.

There’s something about having choices that makes us feel empowered.

It’s about knowing that you have a say in the decision.

It’s also about taking responsibility for the choice you make.

The most difficult part of having a child with a heart defect is that the choices we make for him/her now will effect them as they – God willing – become an adult.

It’s different than having an illness or battling disease.  The ultimate goal in both of those scenarios is to offer treatment in the hopes that your child is cured or go into remission and go on to being an adult and living their life…albeit…checking to make sure the disease or illness doesn’t return.

But, the choices we make – in the Heartland – for our children – are choices that could potentially change the course of their lives.

And the most difficult part of it all….our child has no say.

Our child has no say to every “boo boo” we inflict on him.  He has no say in uprooting him from his daily routine of “milk and Dora on the couch” and playing “Go Gos (cars)” and “Fumbles (football)”. He has  no say to the medication that tastes “yuck” that we try and mask with Gummy Vitamins or spoonfuls of honey.

He has no say to any of it.

As parents, we are supposed to look at our toddler with footie jammies and ask the question to ourselves,”What can we do now…to make sure he has the best chance at a normal life.  What can we do now….that God willing…years from now….we can look at our son and say, ‘We did all that we could.’.”

For past several months, Craig and I have had the opportunity to pray over and research two choices for Evan.

With the help of our medical team here in Dallas and the help of new faces and minds in Boston, we were able to gather data and make some difficult choices for our son.

I plan on doing a “medical” post later to fully explain what is to come for Evan and what is special about his heart and his body.

But, for now…let’s do the basics.

Choice #1: Keep Evan on the surgical path he is on now.  Evan is what they consider single ventricle.  Our team in Dallas – back in August 2012 – felt like they could repair his heart – but when the surgeon came out of the surgery – he felt like going the single ventricle path was best for Evan.  Currently, he has tolerated and quite honestly, thrived, with his heart and circulation.  The next stage of this surgery is what is called the Fontan.  Right now, simply speaking, only the “top” half of his body is connected to his heart.  The Fontan incorporates the liver and brings in the “bottom” half of his body.  In a normal heart, a person’s oxygen level in the blood should be around 96-100.  Evan, with his heart the way it is now, is currently living and thriving with oxygen levels between 75-85.

It’s not an ideal situation – but it buys time until the next staged surgery.

Another key to this puzzle for Choice #1 is Evan’s syndrome.  If you remember, Evan was born with something called “Heterotaxy Syndrome.” In normal speak, his organs aren’t in the correct spots.  His heart is on the wrong side.  If you watch Grey’s Anatomy, this season they had a man come in for the Halloween episode, that they called “Backwards man.”  Christina Yang oohed and ahhed over him.  Because, well….you don’t see “backwards man” often – 4 in a million times – to be exact.  Because of all the specialness of my boy, there is a greater risk for Fontan complications to occur.

The key to this pathway is that it is palliative.  Life extending.  We are buying time until Evan needs a heart transplant.  The Fontan will fail – it is just a matter of when.  The when could be in a year, 10 years, 20 years, 60 years.  It is all patient dependent.

The Fontan also has some serious, terminal complications that affect the liver and the lungs.  There is no telling when or who they may happen to…but it’s a downfall the Fontan circulation.

The good thing about the Fontan is that there is potential for a long life without anymore surgical intervention and just medications. The surgery is relatively straight forward and the recovery is typically a couple of weeks. The Fontan is 30 years old…and there are some patients out there living full lives.

Choice #2: Repair Evan’s heart.  Boston has given us some promising news.  After our visit in December, they gathered the data they needed and came back to us saying that they could “repair” Evan’s heart.  The repair, however, would be much more involved.

Much longer time on bypass (the heart and lung machine that they use when the stop – they will stop my son’s heart – his heart for repairs) and the risks involved in being under bypass for so long.

The surgeon in Boston has to create heart valves that Evan lacks.

He has to replace a valve that will need to be replaced again the future – hopefully – as an adult.

He will have to “make” parts of Evan’s heart that aren’t there.

He is potentially repairing my son’s broken heart.

This innovative surgery is young.  The oldest patients they have now are in their teens.  They are in their teens but they are thriving.  Many are living full lives without any kind of heart medications.

In the early years of this surgery, many, many patients died.

But, it has been perfected by the surgeon in Boston and his surgical outcomes are very, very good.

The key to this surgery – that if all goes according to plan – Evan could have a normal life expectancy.

We could avoid him needing a heart transplant. We could avoid complications that the Fontan (choice #1) has because his circulation would be almost as normal as mine and yours.

But, the downfalls, the surgeon has to create so much of my boy’s heart. He has to fashion leaflets of valves, walls of his heart….and my boy has to be able to tolerate that.  The recovery could be extremely difficult.  Much more difficult than I care to share.

The valves may leak and may need repairing down the line which could mean more open heart surgeries.

But, none of that may happen….and Evan could go on to live a long, full life.

Choices.

Impossible choices.

Craig and I have prayed about this and talked it over with the best hospitals in the world.

We have cried.  We have been angry.  We have been hopeful.

It comes down to a moment I envision in my mind all the time.

I am sitting in a bed. I’m older….much older. My hair is gray.  I’m wearing glasses.

I see an adult man walk up to me.  As he approaches…I see the little scars on his lip. I see the flop of his hair and his killer, crooked smile.  It’s my boy.

He sits down next me, holds my wrinkled hands in his, and I put my hand to his face.  I say to him like I say to him now, “I love you, buddy.  To the moon and back.”

And he smiles at me and tells me, “I love you, too.  And I know all you did for me – for my heart – you made the best decision for me.”

Doing all that we can with the impossible choices that we have.

So, on February 24th, my boy heads into his next open heart surgery.

We are asking Boston to make miracles happen in my boy’s heart.

We are asking for them to “fix” his heart so mine will stop breaking.

We are uprooting our lives as a family of four…in hopes that years and years and years from now…our family of four will still all be here.

We are trusting a medical team of doctors and nurses to get my boy through a very difficult recovery.

We are giving a surgeon, whom can arguably be called the best pediatric cardiothoracic surgeon in the world, we are giving him the absolute privilege of operating on my boy.

We are asking our boy to fight unlike he has ever fought before.

We are praying for miracles.

We are praying for the impossible choice to be the right one.

 “With man this is impossible, but with God all things are possible.” – Matthew 19:26

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Comments

  1. I will continue praying for Evan and his family. I know this was the most difficult decision of your lives. I just want to say in my humble opinion you made the best choice for him. With my heart problems I was sent to sign up for the transplant list. I met a Dr in the elevator that told me of an experimental surgery he’d like to try.mine had mortality rates of one in ten. I was the tenth to have it in the US and one had died. I prayed about it and decided to move forward as well. I am happy to say this was 11 years ago and was the best decision I ever made. Evan is a fighter like I have never seen. I know God has big plans for him. You guys are the perfect parents for him. May God continue to bless your family.

  2. Girl….your blogs pull on my heart and every time I end up in tears. I promise to fervently pray with you and ask those around me to pray with you and for your Evan. If you get a chance, listen to Oceans by Hillsong. The fear and the choices you described in this email remind me of a line in that song, “You’ve (God) never failed me and you won’t start now.” I love you and please continue to keep us posted on how we can pray.

    Kristen Rabalais