world of broken hearts
This page is the most important and informative on my website. It gives you some insight into who I am, why I do what I do, and why I love it so much.
This is a story about the half a heart of a beautiful little girl, an idea, a dream, a vision, a generous heart of another photographer, and a leap of faith.
It all started the day I went in for my five month fetal ultrasound appointment, when we found out that our unborn baby girl, Nadia, had a serious Congenital Heart Defect (CHD) called Hypoplastic Right Heart Syndrome (HRHS). This meant that the right ventricle of her heart was significantly smaller than her left - it was almost non-existent. She would be born with half a heart. We were told in order for Nadia to survive, she would require a series of three open-heart surgeries before the age of three, making her half a heart work for her entire body.
At five days old, Nadia underwent her first open heart surgery called the BT Shunt at Monroe Carell Jr. Children's Hospital at Vanderbilt. After four weeks of recovery, we were able to bring Nadia home for the first time.
Soon after, at seven months old, Nadia underwent her second open-heart surgery called the Glenn and was discharged after only five days. Her last surgery was a couple of months after her second birthday. It was, what we thought would be her last open-heart surgery, called the Fontan. She came through that surgery with flying colors, and she was discharged within five days. At her six weeks post-operation check-up, Nadia was crowned the ultimate Fontan champion of 2012.
We were so excited to have all of these operations behind us, not having to worry about any other upcoming surgeries. We were told to go home and live our lives.
And then, everything changed….
Six weeks later, after a routine check-up appointment with her pediatrician, we were sent to the Pediatric Intensive Care Unit (PCICU) where Nadia had her previous surgeries. There they told us that Nadia's half a heart was failing to contract properly - Nadia would need a heart transplant to survive.
A few days after being admitted, Nadia's health deteriorated. None of the medicines that worked to help other patients in this situation seemed to work for her. It was clear to everyone that Nadia was not able to wait for a donor heart without intervention. She was so very sick. We were afraid that we would lose her.
We had two options, either we do nothing or we proceed with an extremely complicated procedure that had never been done before on a single ventricle heart patient at Monroe Carell Jr. Children's Hospital at Vanderbilt. This would mean, implanting the EXCOR® Pediatric Ventricular Assist Device, also called the Berlin Heart, to bridge the time until a donor heart became available. Nadia would not only be the first to receive the Berlin Heart on a one ventricle heart at our hospital, but there were less than a dozen recorded cases worldwide that had this particular procedure done.
The odds we were given were slim.
Against all odds and with the skilled surgical knowledge of her amazing surgeon, Dr. Bret Mettler and his equally amazing team, Nadia pulled through the surgery. Despite the fact that Nadia was attached to an artificial heart pump, which we gave the nickname "Berliner", and a giant computer that went anywhere Nadia went, she was able to be an energetic toddler.
In the time we spent in the Pediatric Cardiac Intensive Care Unit (PCICU) waiting on a donor heart, I witnessed and experienced things I wouldn’t wish upon anyone. I witnessed children being admitted, treated, then fight, recover, and go home. I witnessed their parents cry, pray, hope and smile when they were able to bring their child home again. I witnessed children being admitted, treated, fight- fight so hard, and lose their battle. I witnessed their parents cry, pray, hope and cry more tears of unimaginable pain, then go home empty handed.
I have experienced joy, happiness, heartaches and unimaginable sadness alongside these families. To say the least, it was heart shattering to witness. I am not the same person I was before.
I spent many nights beside my sweet girl’s bedside, wondering if we would be able to bring her home again. We spent many holidays at the hospital, waiting. What if these were our last holidays together? What if today is the last time I see her smile. What if the last picture I snapped of her on my phone would be the last memory recorded of her?
This led me to email our Family Photographer, Chip, to come and take Christmas Portraits of us while we were still at the hospital waiting.
I remember how fun it was to do something "normal" in our not so normal life. It was fun to dress up, smile and forget about tubes, IV's, medicines and surgeries, even if it was for just a little bit.
Photo Credit: Chip Sprague
Chip, who also donates his time to cancer families in honor of his father, came and spent a couple of hours with us walking around the halls of the children's hospital taking photos. I was so touched that he wouldn't accept a check from us. These portraits he took of us are absolutely irreplaceable to our family.
More time passed waiting, we had our ups and downs, but most of the time you could hear Nadia laughing, singing, playing or telling jokes. She passed her time playing hide and seek with the nurses, building forts and pretend campfires. She held dance and tea parties in her room that even doctors couldn’t resist attending. Nadia had Santa's private number who she often called over the intercom, and had long chats with. She met members of Rascal Flatts, and danced her heart out at the Kelly Clarkson Christmas concert that was held at the hospital for a handful of patients and their families. Nadia’s absolute favorite time in the hospital was going on her ten minute walks around the halls of the PCICU passing out stickers or candy canes to other patients and staff members. She was, despite the circumstances, a normal, fun, stubborn, and energetic toddler.
After five and a half months of waiting, we received the call. They found a perfect match, a whole, four ventricle heart, her lifesaving gift, a new chance at life. After nearly six months of waiting and praying, we were able to bring Nadia home again.
This is why I became a Photographer.
It saddens me that friends of mine have had to fish for photos of their babies that have passed, just to find distorted, blurry cell phone photos of them. Some CHD babies never leave the hospital after they are born, and taking photos, let alone professional photos of them, is the last thing on a family's mind. I know this, because I have been there.
One night in March of 2013, we had been home from the transplant for less than a month. I was on Facebook looking at these blurry photos of these beautiful children, wishing these families had the same experience as we had with Chip. I wanted so badly for them to have portraits they could hold on to and cherish forever. The truth is, having professional portraits taken is a luxury not many can invest in, especially not when medical bills are piling up.
I blurted my thoughts out loud "I wish there was an organization for families like ours that provided free photography".
I pretty much had a conversation with myself. My poor husband, Tommy, was confused and completely clueless as to what I was talking about. Tommy and Nadia were lying in bed watching Mickey Mouse. I smiled and joked, "Maybe I should do it myself.”
I expected no answer, Nadia had no idea what I was talking about either, but she turned to me and said with a smile "you can do it, Mommy".
I laughed, kissed her and left it at that, but her words lingered in my head for days.
I had no prior experience whatsoever in the photography world. I owned a Canon Rebel T3i and a standard 50mm 1.8 lens. I had no idea what I was doing. All I knew was that I wanted to do this; at least I had to try.
I have since upgraded to better equipment, but it didn't take me long to realize that in order to give back to families with my free photography, I would also have to earn a living by being a photographer.
I also learned quickly that becoming a good photographer doesn't mean just being the owner of a nice camera body and lens. There is a lot of hard work and dedication behind it.
I fell in love with it. I fell in love with pushing the shutter button. I fell in love with the smiles I was able to put on someone's face when they saw their images. I fell in love with the ability to freeze memories in time. I think my whole family would agree that I eat, breathe and sleep anything photography-related.
It has been almost three years since I started this journey, and I am loving every single second of it.
Many of my fellow amazing "heart families” have their own ways of giving back – forming non-profit organizations, like Haley's Hearts Foundation, which supports the financial needs of families; raising money for the various organizations supporting CHD research, such as The Brett Boyer Foundation; hosting bake sales, organizing blood drives, selling t-shirts . . . the list goes on and on.
Like many of those families, I chose an option which has meaning to me. Providing pro-bono photography for CHD families is my way of giving back. I have firsthand knowledge of the impact of receiving these portraits. I want others to have that same experience because sometimes these portraits are all a family will have left of its loved ones. But, I soon realized I am able to do so much more with my photography than to just give back to others through photographs.
With the help of families willing to share their stories and perspectives, I am also working to raise CHD and organ donation awareness. Through powerful portraits of those families’ realities and everyday lives, and by providing a way for their voices to be heard, I have been able to reach even bigger platforms, like People magazine and Good Morning America.
I officially started World Of Broken Hearts in June 2015, and with the support and help of my friends and family who pushed me to turn it into something bigger, World Of Broken Hearts became an officially-recognized 501(c)(3) organization in December 2018.
My dream is to inspire others to learn more about how organ donation is changing lives and to say "yes" to being an organ donor. I want to inspire others to learn about the disease that affects 1 in 100 babies in the United States alone, to hopefully lead them to be more involved in the lives of those precious babies, whether it's to volunteer, donate to CHD research, or just tell the story of one of these sweet babies to another person.
I have big goals and dreams for World of Broken Hearts, and I would have never come this far without your contribution.
I give CHD families the option of keeping their photographs private. The ones posted on my website are all with the consent of those families.
If you are a parent of a child with CHD and currently an inpatient at Monroe Carell Jr. Vanderbilt Children's Hospital and would like photos taken, please feel free to contact me. I will do my best to get back to you as soon as possible to schedule a time to come by, as long as my time allows it. There are absolutely no strings attached.