Sunday, May 27, 2012

Hypoplastic Left Heart Syndrome- A post I never wanted to write

My fourth ultrasound.  Our last child. It was going to be a breeze.  I had planned to celebrate that night with a fun family dinner, followed by a pink cake or a blue one.

The tech glided along with her running commentary of what we were looking at. See the baby's little fingers?  Here's the stomach, the spine, the brain, little feet, legs.  It looks like a boy!  Yay!  A boy!  Just what we were hoping for...quickly she was back to the heart.  Why is she back at the heart again?  She has spent a lot of time there.  I watched the fast thump, thump thump on the screen.

I looked nervously at Scott.  Did he notice how much time she was spending looking at the baby's heart?  He didn't seem to notice.  The tech kept the same calm expression.

"There's just one thing I want the doctor to look at..."

And then another doctor.

"It looks like Hypoplastic Left Heart Syndrome".
Pardon?  I heard the doctor say heart and syndrome.  Heart and syndrome.
"It means, the left side of your baby's heart is small and underdeveloped.  The left side of your baby's heart will continue to deteriorate and have no function."

My baby.

A few weeks later, the pediatric cardiologist at Primary Children's made sure we knew how serious this diagnosis is.  His face showed it.  The room he brought us to.  The cozy couch.  The lamp.  The box of tissues.  Two women followed us into the room.

"It's not the most rare heart defect, but it is among the most serious and complex."  What was I listening to?  I tried hard to concentrate on his words, the diagrams he was showing us.  

"This is a normal heart"
I've seen enough pictures of a normal heart to last me for a while. 
Thank you.

He told us we had a choice to make.  We could choose to do nothing.  Take our baby home.  The valve currently connecting the left side and right of the heart would take a few days to close after birth.  Our baby would die.

Our other choice was hard too.  Heart surgery.  A minimum of 3.  One when he is a few days old. One when he is 4-6 months old.  One when he is about 3.  The heart can't be fixed, just re-plumbed.  He would live his life with half a heart, acting for both sides.  No one knows how long a heart can sustain life this way.  They haven't been doing it long enough.  Not a lifetime.  It is a hard road, with lots of risks and possible complications.  Expect them.  

I held it together for as long as I could.  He was talking about my baby. He fumbled to hand me the box of tissues.

I went home and looked at my 3 beautiful children.  Their healthy bodies have become an unbelievable miracle that I had been taking for granted. Everything works. 

My brain cannot quite process the thought of one of my children enduring such a thing.  Including this newest little boy, whom I love with such fierceness.

We have to try. I have to trust in the Lord.

I am unbelievably scared. Every day I have to make an effort to not get overwhelmed.  There are so many unanswered questions.

One thing I am sure of is that he was always meant to be part of our family.  We will love him forever.  We hope and pray that we get to do that here on earth. For a long, long time.

Thump, thump, thump.


MiKell said...

Thank-you for this post. It makes me grateful for the blessings that surround us. We will keep your family in our prayers.

Hayley said...

Oh Amanda,

You beautiful thing. I cannot imagine how scared you must feel. I am so sorry that you have to go through this.

But I do completely understand the helplessness that you might feel with all of that unknown. And I do understand putting your trust in the Lord. And it's awfully hard. But I know that you will have a support system to help you through it. You are very loved!

I just want you to know that I am here if you need anything. That is not a shallow offer, I really mean it.

And I also want to say Congrats. I know this will be another beautiful and wonderful addition to the already fabulous Morton bunch. That baby is one lucky baby to be loved already so much.

Your in our prayers.

Tara said...

My heart goes out to you guys during this difficult time. You and Scott are so strong and your baby boy is blessed with awesome, loving parents. You and your family will be in our prayers.

Katie Jane said...

In know I don't know you very well, but oh man will you be in my prayers! You are one amazingly strong woman and are making some super hard decisions. What a lucky little boy he is to have a mama like you. You will fight for him and do everything it takes to make his life the very best it can be. Love ya.

Stacie said...

Thanks for writing this post, even though you didn't want to. We have heard a little about this, and are so sorry for the news. (But not sorry about another boy--hooray!) We are glad to hear more about what is happening, and expected to happen, so that we can pray more specifically than we have already been praying. We hope you'll keep us posted.

We hope you can be comforted through your pregnancy; we are sending our love!

Jill said...

i didn't know you were pregnant. congrats. a boy is even better. :) we will keep you in our prayers. We wish you the very best.

JAM said...

Beautifully written, I am glad you posted. I love you, you are amazing.

The Mortons said...

It makes me cry to think of the confusion and unanswered questions you have. We love this baby so much, we already know how special he is. And how special you are for being his mother. loves!

Anonymous said...

Scott and Amanda,
We love that little family of yours and hope and pray for all that is best. I know that the Lord knows and trusts both of you in sending this sweet spirit to such a good home.

Jennifer said...

What a beautiful post, I am thinking about you and praying for your family. Please, let me know of anything I can do.

Evie said...

Amanda, Please know that you and baby Leo are in our thoughts and prayer daily. We pray for your comfort and peace and for things to work out for the best. We love you. Hang in there. We will not be to your shower, but we are sending you something.

Michelle said...

I am thinking about you and your family and send you all our love and prayers.

Nells-Bells said...

oh my goodness. i couldn't make it one paragraph through your post without tears free flowing down my cheeks. girl, we love you guys and are praying day and night for you. said...

This is Antie Mimi
Your mother just told me about Leo and what you and Scott are going thought , I am so sorry I wish I could say some thing wise and comsolingn but I don't know what I could say but put your trust in the Lord, he wants you two to be Leo's parents you will be strong for Leo if he is here for 1 day or 60 years..
All our love
Tony, Mimi & Leela

Anonymous said...

Could you send me the URL for Leo's blog.