Sunday, February 13, 2011

Voices of the Heart: 15th Annual New Hampshire Heart Ball

Last Friday I spoke before an audience of 400 at the Sky Meadow Country Club in Nashua, New Hampshire. My speech was about our journey with Luna (I accidentally wrote 'to' Luna, which could also be accurate-the language and world we were about to embark upon was about as foreign to me as the moon.)

The transcript below is an abbreviated version. For a bit of levity, I added in the fact that Luna's cardiologist, the one who gave us her official diagnosis when I was 22 weeks pregnant-is referred to as 'Dr. Gorgeous'. And how there were worse things than being stuck in a room with him for hours and hours, week after week, for my regular echocardiograms.

Otherwise, the speech wasn't too much of a disaster. Afterward, the director asked me to speak at an engagement in April. I naturally accepted. There are worse things to do in life than spread the message of hope.

2011 Script

Sabrina Velandry; Journey with Luna

In October of 2007 my husband and I went in for the “fun” ultrasound to find out the sex our second child. We had a bet going; who ever guesses the sex correctly gets to name the baby. Paul guessed right with our first child, who then was a sixteen month old girl named Sienna.

We entered the darkened ultra sound room and I laid for what seemed like an eternity while the tech rolled the greased-up probe over my enlarged belly. She informed us that we were to have another girl. Paul and I exhaled and smiled, another girl. We would have two girls just about exactly 24 months apart-we were excited.

Paul left to pick-up our toddler from daycare and I stayed back to finish-up the examination. As I was sitting on the bed in the examination room, I could hear whispers from behind the door. Though I could only make out certain phrases, I heard the words, “something is wrong with the heart.”

My OB entered the room just moments later with a broad, forced smile. “We’re going to have to take another look at the baby’s heart. It’s just a precaution, but we’re going to send you to the hospital next door so we can get a better look on their equipment”.

I drove over to the hospital in a complete daze and went in for a level two ultra-sound. There the technician only needed a few moments to discern my baby’s heart: “I don’t specialize in fetuses, but I can tell you with authority this baby is missing half her heart.” My mouth somehow formed words and I managed to ask: “what should I do?”
“I don’t know, that’s all I can tell you.”

I exited the hospital and walked into the busy parking lot. For those of you who have been dealt a difficult diagnosis, you may know the sensation of feeling like you are outside your body. That’s how I felt that day-like I was actually looking down on myself from above.

Our lives changed completely starting with that warm October afternoon. What I didn’t realize then, is that they were going to change for the better.

"Your child, the baby you're carrying...she has a very rare and serious heart defect."

The doctor continued in hushed tones. Speaking in a language that was completely foreign to me; pulmonary atresia, pulmonary stenosis, double outlet left ventricle, dextrocardia...

The risks and complications, however, were words I understood.

The diagnosis, spoken by a rather handsome Boston cardiologist sprayed my soul like shrapnel. Some pieces of the information settled deep within me. Still others bounced off. I imagined the phrases 'feeding tubes' 'heart transplant' and 'heart failure' laying on the ugly grey institutional carpet in the tiny consult room in the hospital.

Paul and I left Boston numb. Quietly, without speaking a word to each other we snaked through the Fenway traffic. A huge, late October Harvest Moon beamed down on the Red Sox fans. Later, we would give that Harvest Moon to our baby in the form of a name. Luna, Goddess of the Moon.

The air was thick and warm. The city vibrated. Game 2 of the World Series, Boston vs. Colorado. I stared at the 20-somethings skipping and yelling in the streets. With my window open all the way, some of the revelers nearly brushed me as they skipped past the car, yet I felt a million miles away from it all. I was a tourist, riding a tram, viewing American History comfortably from the darkened museum-or so I felt at that moment.

"This baby will be the best thing that happens to us", I thought, as we pulled on to the express way.

After the official diagnosis we were given three options. The first was to terminate. At 21 weeks pregnant this thought was unimaginable. The second was to give birth to the baby, but not seek any medical help for her; “a natural ending,” an option that basically means you watch your child die.
The last option was to seek medical help, and put Luna through the three open heart surgeries that would need in order to correct her abnormal heart and circulatory system.

My husband was terrified of the mountain debt that we could incur caring for such a medically needy child. Though I winced at his overly logical thinking to the matter, he was right. Caring for a medically needy child can financially destroy a family. Jobs are left, typically by the mother, so she can take to the front lines in a never ending war against the insurance companies. I too, eventually was sucked into this war. Ultimately I would have to temporarily abandon the company I was growing so I could provide day to day defense against our insurance company; who denied coverage, ignored our claims, or falsely charged us for Luna’s rigorous care.

Like many do when faced with a life crisis, I dug deep spiritually to see what kind of guidance I could find. Never one for church, I read books on the power of positive thinking. One evening while my husband slept soundly next to me, I thought the words “this baby is going to be the best thing to ever happen to me” again and again in my head. At first I didn’t believe my own words. But soon I would gain peace from stating this phrase over and over. One evening while practicing this meditation a warm feeling came over me, and it was like the sentence, “this baby is going to be the best thing to happen to us” were spoken back at me. I knew then that this child was going to be OK, more than OK, I knew that our baby girl would be special.

After the news settled in and after I knew there was no way I could end-deliberately end-her life at just 21 weeks, a funny calm settled into me.

I've always welcomed change and yearned for adventure. It was all how you chose to look at it I thought. This too would be an adventure.

Luna was born on March 11, 2008 and endured her first surgery, the BT shunt, at two days old. At six months of age she underwent the Bi-directional Glenn, and at age two she had her Fontan. In between her surgeries, she underwent three cardiac catheters. Two exploratory, and one to cauterize an errant blood vessel.

Next month she’ll be three years old. She is a spunky, smart, and determined little girl. In a recent progress report, her teachers praised her as a natural leader. Her favorite phrase is “I do it.” Indeed, Luna can do it! With the assistance of the best doctors and medicine in the country, and her strong will to survive, Luna ‘does it’ and does it well each and every day!

Thank you for your support!

The lovely Erin Fehlau from WMUR Channel 9 News, and Dr. Paul LeBlanc, President of Southern New Hampshire University (both were charming and funny emcees!)

Funny story about this one point during the night, it toppled over and fell on the people at the table sitting in front of it. The Architect and I chuckled while we watched the staff struggle with it, then finally cart it away.

Dear friends Amy & Charlie.

The Architect.

1 comment:

Annie B. said...

Wow; we really have been on a similar journey. I'd love to see the whole speech; that was really engaging!

Recently I've been writing out my experience with my daughter's heart defect...someday I hope it turns into a book that can benefit others somehow.

Did you sponsor this ball? I'm curious if there's one in VA. I'll have to research this, but any info you have would be awesome!