Monday, February 27, 2012

On Being A Heart Mom

There's an article in the latest People Magazine that talks about a little girl born with a heart defect: hypoplastic left heart syndrome.  The writer of the article called the heart defect 'very rare'.  I think 'very rare' becomes relative, depending on your circle of influence.

Hypoplastic left heart syndrome means basically that your child is only born with half a heart.  It means that your child will undergo multiple surgeries to postpone the inevitable of a heart transplant.  It means that you as the parent will more than likely outlive your child.  The oldest living person with this heart defect is only in his 20s. 

In my world, HLHS is the most common heart defect I see, and it makes me sad.

Over the weekend I went to a dinner that is held annually for heart moms.
There were over 100 women there, all who have had a child or children born with broken hearts.
Almost every person I met asked the same question: "Is your heart baby an angel or still living?"

I know of four little girls who have the same heart defect as Emily.  All four of their mommies have been told that they have their daughter as long as they have her.  There is nothing more that can be done for them, and that at some point they will lose their fight against their heart defect.

One mommy is facing that reality a lot sooner than she planned on.

At the dinner I sat at a table with three other women.
Two of them have had to bury their babies.
The other one told me that she is fully aware that at any point her son could lose his fight.

I just stopped typing this post to read a text from a friend, another heart mommy I met during Emily's last hospital stay.
She was letting me know that a sweet two week old baby girl is more than likely losing her own battle and my friend wasn't sure if she should go and give the mom a hug, or leave her alone for now.

As I looked around the room Friday night, and watched the faces of all of these beautiful women, I knew two things:

None of them asked to be a part of this group, and every one of them are fighting their own battles for their baby...fighting every day of their lives.

If there is a blessing in joining the heart mommy group, it's that every single day I find strength in these women who are fighting.  I find joy in their successes, and I mourn with them in their losses.  And I'm honored to associate with some of the bravest women I will ever know.


Traci Bulkley said...

Beautiful. I am so happy to know you. <3

Jill said...

Noelle, there are no words. I love you. Thank you for writing this. It's beautiful. As I always say, it's a family we never chose but now that I'm here, I am so glad to be part of this amazing group of people. I have such admiration for everyone. Including you my dear.

Angee and Thom said...

Love you Noelle!

Ali said...

That is so beautiful Noelle! I love reading your posts. You have a way with words that I can only wish I had.
I saw you at the dinner, but never got a chance to meet you. Hopefully next time!

jastalfam said...

<3 glad i got to know you a little bit better!

Bend said...


Mr. Thompson and Me said...

Oh how my chest hurts. Like a ton of bricks is sitting on it. Being the mom of an angel just plain hurts. Every minute of every day. Give those women a hug from me, my friend.

You are brave and I love you.

TortugaRachel said...

I would be willing to bet there is another heart mommy out there that thinks the same things about you.

Mom on a Line said...

I am glad you are able to talk with other heart moms in person. It helps, even if it hurts at the same time. I thought you should also know that there are some HLHSers who are now in their 30s. And I have found one adult, older than myself, with ToF with pulmonary atresia. Since I found her, I'm hopeful there are more. And finally, I'm glad to know you too, one heart mom to another. You are have such a gift with words. Sending lots of heart hugs.

Of One Heart said...

I bet you inspire them. May God bless all of you girls and your babies. Amen.