Monday, June 26, 2006

I said it once before, but it bears repeating

I hope this doesn't prompt a slew of email from sandal-tan-line fetishists.

Aw, who am I kidding?

Bring it on.

My life keeps getting weirder by the minute.


OK, have some sorbet to cleanse you pallette.





'Cause, here is my niece, Lucy.

She is in a parade in a couple of weeks, celebrating something called Lionheart, a foundation for kids born with heart defects.

She is featured on this poster:

She is really an amazing kid.

I have told this story before, but it bears repeating.

Lucy was born with a rare, four-part heart defect called the Tetralogy of Fallot. (A hole between the ventricles, obstruction of the right ventricle to the lungs, the aorta is wrapped the "wrong way" around the heart, and the right ventricle has a thickened muscle.)

This is a serious, very serious condition.

In addition, she was born with pulmonary atresia.

Your pulmoary artery is "T" shaped.

It provides oxygenated blood to the lungs, essentially keeping the lungs alive.

Lucy was born with an upside-down "L" for a pulmonary artery, and was missing a critical branch.

As recently as 15 or 20 years ago, kids who were born with pulmonary atresia ended up with one lung, since the other lung basically died shortly after birth.

Anyway, as you can probably surmise, a child surviving this is extremely rare. I have seen figures in the neighborhood of of 10%. A doctor confided in me that, given Lucy's condition, it was actually about 1%.

At least that's what I was told when I showed up to the hospital, to see my niece for the first time.

The treatment was unbelievable, and brutal.

She went into the hospital at ten days old, and didn't come out for a few months.

She underwent no less than ten major surgeries in that time, and technically died twice. Once for over a minute.

I nearly died myself.

I don't pray. It's generally not my inclination, but I would have gladly traded my own life to give that kid a chance.

And that's what I told God.

When I first saw Lucy, I counted 28 tubes coming out of her tiny, little body.

These tubes pumped her blood, fed her, cleaned her blood, digested her food, eliminated her waste, breathed for her, fed her drugs and kept her alive.

The most shocking part was that her chest was held open by clamps in a "V" shape.

A piece of heavy-duty yellow saran wrap (my interpretation) was over her chest.

Her rib cage was spread back, and I could see into her chest cavity, through the saran wrap.

I could see her little heart beating.

It was about the size of a walnut.

Anyway, I am struggling to finish this post, simply because it was the most difficult, heart-wrenching thing I have ever seen.

My sister, Molly, is the strongest person I know.

They performed multiple procedures, sealing the hole, widening the ventricle, and, most critcial, replacing/repairing the pulmonary artery.

They worked hard on that one.

It's hard to perform surgery to repair the equivalent of a wet piece of spaghetti.

Of the one percent who survive this medical condition, many do not live long. Most of the survivors (90%) have some type of major side effect, such as deafness, learning disabilities, "retardation," etc.

To top it all off, she was heavily medicated, on an opiate derivative called Versed. Because you don't want a kid just waking up when her chest is opened.

So, the final bit of her treatment involved methadone, because she had been on such a high dose of morphine.

I started stroking her hand and the nurse said, "You might not want to do that, she is going through some pretty serious withdrawal right now, and any touch is very painful."

I mean, Fuckin' A.

And Lucy, dear child, is pretty much fine.

She is a dancing, singing, brilliant, sensitive, adorable, vocal little darling.


She is in Montessori, and is a high IQ child.

In short, she's a bona fide miracle.

You never really are out of the woods when you have what she has, since this isn't exactly like getting your knee scoped.

I love her dearly, and I make no apologies for playing favorites amongst my nieces, nephews, and unofficial nieces and nephews(JM, Birdy, Vaughan, and Aden).

I mean, shit, wouldn't you?

That walnut-sized heart I saw is probably the size of the Hope Diamond by now.

And a thousand times as precious.


Blogger Rachelle Jones said...

well done, and yes she is precious...

9:30 PM  
Blogger shy_smiley said...

I'm in tears myself. She's already done such big things in her life and sounds like she's headed for even bigger. She's amazing. What a great post.

(we are, in fact, out of cheeps)

9:37 PM  
Blogger Buffy said...

This breaks my heart...she's so gorgeous.

6:55 AM  
Blogger Tanaya said...

Wow. It does bear repeating.

She has your chin!

8:08 AM  
Anonymous Anonymous said...

I am always so humbled by such powerful stories and by the strength it takes to live them. Thank you.

9:53 AM  
Blogger AFSister said...

Beautiful post, matched only by your beautiful niece.
Babies are incredibly resilient creatures. Stories like this never cease to amaze me. I am so blessed.
When my son was 6 months old, he had surgery to remove a cyst over his eye. I was a nervous wreck. A friend from work had a child in the hospital at the same time. His baby was about 2 months old, and undergoing his second open heart surgery. After seeing his strength, I felt stupid and embarrassed for my fear over a simple outpatient surgery.

I, too, am in awe of your sister.

12:07 PM  
Blogger Mike Angie Patrick Aaron said...

WOW! What an amazing and precious little girl. Mike said that I needed to read this post, but I didn't realize that I would have tears as I read it. She is truly a miracle. Thanks for sharing the story.

1:54 PM  
Blogger Gretchen said...


3:05 PM  
Blogger Eve Grey said...

Hmm, i loved that. I generally don't believe in God either, but God bless her sweet precious heart.

8:25 PM  
Anonymous Anonymous said...

What a beautiful girl. And about those feet of yours, next time you're out, wear the sandals on the wrong feet to complete the criss-cross pattern. ;)

8:27 PM  
Blogger BostonMaggie said...

Thank you for sharing this.

8:48 PM  
Anonymous Anonymous said...


I need to make a novena for this lovely little girl.

G-d bless and may St. Anthony watch over her.

3:56 PM  
Anonymous Anonymous said...

I know what a miracle Lucy is 1st hand. I am proud that my nephew feels as he does.....all of us know that she is "our miracle" & I agree also that Molly (&Pat) are amazing too.........
bless Lucy Kate & Joey

much love & soft hugs,

4:11 PM  
Blogger Mrs_Who said...

Thank you so much for sharing this wonderful story of your beautiful niece. The world needs more stories of these miracles!

9:04 PM  
Anonymous Anonymous said...

Beautiful post, Joe. Life is a precious gift.

10:42 AM  

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