Compassionate Care

I was reading through a group on facebook about Hypoplastic Left Heart Syndrome when I came across a post. It was from a woman who had found out that she was pregnant with an infant who had HLHS and was trying to decide the best course of action (surgical route, compassionate care, ect).

Now- many of you might know that HLHS babies go through a lot. They are born with a pre-determined '3 open heart surgeries' surgical route option that (for chromosomally healthy babies) has been very successful- nearly 90 percent at major hospitals.

Not only do they have to go through those three surgeries, but they also are left with only half of a heart at the end. Which means, their heart could have anywhere from 15-30 years before it needs to be replaced. Half a heart can only do the job of a whole heart for so long.

So, although my first reaction when reading a post like this is to push the mother towards the surgical route and hope that she has the strength to endure all that.. I also have to remember that there is no cure for half a heart. At the end of their journey- they will still have a baby with half of a heart who faces infertility (if she is female) and faces developmental issues along with that.

As for my family, we searched our heart and decided together that we wanted to let Gabe fight. Gabe doesn't get to say what he wants to do- so we were given the choice to decide for him. A parenting choice. We chose to believe that the fight was and is worth it for us.

So naturally- anytime I see someone who is trying to decide what is best for their sweet blessing, I assume they would want to know how very worth it that fighting is to us. How irreplaceable my son is- how glad we are to have him.

But as we prepare for this next surgery- I realize even more than ever- that the journey we chose is difficult.

Heading to Boston alone with my husband in babies- that in itself is terrifying to me. It scares me to think we may not have the finances to support our trip home afterwards... Though I know God works these things out.

But it scares me more to know what we are about to see. My son, like he was at 17 days old- sedated and intubated and in pain. He isn't a newborn anymore, we aren't fighting for just another day with him. We are fighting now, for a lifetime with him. So- although it is most certainly worth it for us... There are many reasons I can say that compassionate care is not an easy choice. It is a difficult choice to choose to hold your little one and wait for them to stop breathing.

But, if I would have chosen it- there would have been joy in those moments too. When Judah was born, he sounded like his airway was obstructed- he was whisked away to the NICU and out of my arms where I fought to have him back for 3 days. I never got that bonding time, to hold him on my chest. Those precious moments you can't get back.

Then, Gabe was born. We knew his birth would mean the same thing.

And how I long for those moments. My greatest dream is to have my baby in my arms the moment they are born. To hold them close, to treasure them in those 'first moments'. It is my hearts desire to have that- although it may not be what God has in mind for me.

So knowing that if we chose compassionate care, I would have gotten to hold Gabe on my chest and treasure those sweet moments together- no pain, no drugs, for at least 2 days... I have thought about that (especially after he was intubated and doing so poorly from the medications)...

I suppose what I mean by this blog is that- although I could never choose to let my son fade away without a fight.. I can understand why others would.

Though hard to say, it is certainly true. Too many babies with HLHS are lost after 1 or two or three surgeries. Too many parents go through that excruciating pain of falling in love with their personality and their traits and then not having them in their arms ever again.

However, for me, there is one thing in life I hold true to. Beauty from ashes.

Look it up :)


Kristin said...

God chose you to be Gabe's mother because He knows you so well. He knew that you would be wise, loving, and grateful to have Gabe, and He knew that you'd let Gabe fight and fight with him... and He knew that no matter the outcome, you would be stronger than ever. I can't imagine how hard of a decision it is to make, or how hard it is to go through the "darker" times after either choice. Judah and Gabe have some great examples in you and Nick.

kim said...

I agree. Comassionate care was not for us either.
Just yesterday Wills speech therapist stopped me in the hall of his preschool. She thanked me for sharing Will. She said she loved him, he made her happy. I told her that some mornings he is dragging his feet about going to school and I remind him that she lets him "play Elmo on her I pad" and he runs to the door. She said sometimes she is dragginf, then remembers she has Will that day, and it makes her smile.
I go to his classroom, and watched two little girls mother hen him with hugs, helping him put away his coat and backpack. holding his hand and sitting next to him in circle time.
Will brings so much joy, to our family, friends, neighbors, classmates, his teachers, therapist...even strangers in the store. We didnt even know what we were fighting for, we didnt know that God had a job for him even as a little guy. Will brings smiles to the faces of many....
But we knew we had to fight...
I will be right by your side, praying with you and fighting for Gabe!

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