Ethical debate

If you have ever been in this position, you can understand exactly the feelings that Nick and I experienced at the moment I am about to describe.

If not, you can imagine, for a moment, that you are faced with this.

Your son, who is about to be born- has been diagnosed with one of the most severe heart defects that exist.

You are in an office, talking to a doctor who tells you that there is nearly no hope- that the heart defect that he has will leave him with half a heart.

They say abortion is an option for your twenty one week baby. All you want to do is get away from these people and their intentions. You have felt this baby kick you for some time now. He is your second son, you already know. You already know his name. You have imagined him for weeks and weeks.

You have felt him stick his foot in the same spot in your ribs as his brother did. You know that when he gets the hiccups he gets extremely irritated. You know that he sleeps through the night and loves the sound of voices.

His Daddy has spent a lot of time talking to him- calling him by name.

And they tell you that his life has no future. How can it be? You have felt him, he is strong, he has a little personality... He is alive.

But you are given this option.

And then the next option is to have him, for him to be born and to watch him go through surgery that might not help him, that would leave him with half a heart. Watch him go through pain.

For the next 19 weeks of pregnancy, you get to wonder and ponder this choice. The choice to take your son home to die.

I can't say that I didn't consider it. We knew he would have at least 48 hours of life we could spend just cherishing him if we chose to do that. Before he died.

Nick and I love Gabriel. We have loved him since before he was born. Since he was a speck, we have loved him.

Every single time they strapped his heart up to a monitor (once a week or twice a week towards the end of pregnancy), I heard his heart galloping and I thought... How can we not let him fight?

But then he was born.

And you see this sweet baby. And you see his face, and you know almost immediately that he has Downs Syndrome. And then you know, the decision is there.

And you could take him away from all the pain, and all the needles, and the surgeries, and the judgement.

And everyone would understand.

But you look at him- your son. And there is not an option. You WANT him.
You want him to live.

And the only way for him to live is for those hands, reaching for him, waiting for him, for you to give him to them.

The hardest moment, the most difficult moment you could imagine is handing your son to someone to take him away- not knowing when and if you would see him so pink and so perfect ever again.

And then in the days that followed, they beg you to take him home to die. They say it is the best option. That surgery was pain. Pain he didn't need to go through.

How could a Mom argue with that? Never, for a moment, do you want to see your child hurt.

But I knew that taking him home was not an option. It was this, this surgery or die.

And some said "He has DOWNS SYNDROME. It isn't worth it."

Well to all of you people who think it would have been an ethical choice to take him home to die:

I can't say that the decision was easy.

I mean- the abortion one was. He was going to live as long as I could provide for him. That was easy.

But the surgery path, being told that he would get the first two surgeries, but would likely not survive the third... We decided to go for it- and that wasn't easy.

But look where we are now!

Gabe is going to Boston to receive a BI-VENTRICULAR repair. A WHOLE HEART. Can you imagine!? The goodness of God, the people who contacted us.. The HOPE.

If it were any more possible to be proud of the choice we made, I think it would be boasting.

Here's to the miracles that led us to Boston.

Here's to the fight.

Here's to the journey that God put us on.


Norman Caulk said...

Julie... God has led you this far, perhaps to test your faith. He found it solid as a rock. So not only your faith but that of all those hundreds of others will go to Boston to see what God has prepared those surgeons to do for your child. What an amazing world God has given us to live in. We all love you and will continue our prayers for your son and his wonderful parents.
Love to you all.. Uncle Norm

Unknown said...

Julia - You write so beautifully. Another gifting the Lord has blessed you with.

I am so excited for your trip to Boston.

Standing on the promises I cannot fall,
Listening every moment to the Spirit’s call
Resting in my Savior as my all in all,
Standing on the promises of God.

Bless you Julia. I love you all

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