February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD
Imagine for a moment you’re hand in hand with your spouse on the edge of a great expanse. Something like the Grand Canyon. And there’s a bridge under construction that goes from one side to another. There’s caution tape everywhere and a lot of unknown about which parts are stable and which ones could crumble if any weight were applied. Then imagine that by no fault or choice of your own, you are placed on that bridge, 20 weeks pregnant with your first child, and forced to put one foot in front of another. And then another. And then another. You don’t know if or when the bridge will crumble. You don’t know if it will ever be finished, or if it will be finished in time for you to cross it. You just know that you are forced to walk it. One foot. And another. And another. White knuckles, squinty eyes, sweaty palms, racing hearts. This is what it feels like for your child to be diagnosed with a congenital heart defect.
My husband and I found out that our daughter had a congenital heart defect at our 20 week anatomy scan. Her diagnosis is called “Tricuspid Atresia”. It means that one teeny tiny little valve on the right side of her heart didn’t develop and as a result, the e-n-t-i-r-e right side would never function. Our sweet girl….the one we prayed for, longed for, and planned for… would have half of a heart. I went into premature labor at 30 weeks and Addison Fork was born on September 12, 2013 at Long Beach Memorial, CA at 3 lbs. 3 oz.
She spent 77 days in the Miller Children’s Hospital NICU and PICU, during which she had her first open heart surgery at nearly 5 pounds. Let me tell you – handing a frail 5 pound baby to a surgeon to have her chest cracked open, is just about as impossible of a task as they come. She finally left the hospital walls and came home to us for the first time on Thanksgiving Day.
Last spring, Addison had her second open heart surgery (with numerous complications) that landed us in the hospital for another month. By the time she was discharged, Addison had spent more of her life in the hospital than out of one.
We spent the rest of 2014 and 2015 (so far) hospital free and it has been b-e-a-u-t-i-f-u-l. We’ve learned that she loves books, allergic to sweet potato, loves being outside or in the bath, is obsessed with dogs despite her dad’s allergy to them. She always smiles with a crinkled nose, has the most ticklish collarbone you ever saw, and is a very happy, social little girl. And, oh man, is she resilient. She is now 16 months old and 20 pounds. When Addison reaches 30 pounds in another year or so, she will have what we hope will be her last open heart surgery. This will complete the 3 surgery process which re-wires her circulation and enables the left, functioning side of the heart, to do the work of the entire heart. From there, Addison will have a pretty gosh darn normal life – and praise be to God for that! She might get winded a little more easily than other children, and she might not be able to have her own kids one day, and eventually, heart transplant is a very real possibility for her in a few decades from now. We will learn her limits as she grows.
I remember hearing for the first time that our daughter would have half of a heart that could never function. Before the treatment was explained to me, I assumed there was no way she would survive more than a few days. The fact that they have this surgical process to give her the time that she will need, is astounding to me. It is 100% because of the heart research that has been funded in the last few decades. The truth is, these surgeries did not exist before the mid-1980s and the first generation of children to receive these surgeries are just now in their 30s.
So what does CHD awareness mean to me? Go back to the bridge. We don’t know where heart research will go from here. We don’t know if the rate of research will develop faster than her heart will need it to. Are we walking faster than the bridge is being built or will it be built for us in time? We don’t know how many years this version of a heart will last. We don’t know. We just walk. One step. And then another. And then another. Praying for God’s will to supersede our fear and worry and praying even harder that His will is for her to live a long, long, and healthy life. The more awareness we can bring to the outside community, the more money will be designated to heart research. And the more heart research takes place, the more progress is made. And the more progress is made, the more chance our daughter has at a normal life expectancy. In this social media era, we are so easily flooded with this type of story. Children with this illness or that disease. Children that have passed suddenly or more expectedly. Facebook shares and hashtags and GoFundMe projects. These types of children are everywhere we turn it seems. This story is not unlike dozens of others that I’m sure you’ve heard. It is important to me because it’s my daughter, so I want it so desperately to be important to you too. But you have your causes because of your own life experiences. I get that. But please try not to let the excess of these stories make you numb to them. Take just a moment to memorize the uniqueness of these faces not just as faces, but as entire lives. Lives that can bring so much to this world if they’re only given the chance. This is Addison. She is absolutely exceptional. She has already changed this world in a year and a half. I can only imagine what she could do with a lifetime.
We welcome you to follow Addison’s story at www.addisonlaine.com or through my Instagram page @missfork.
- Marisa (Addison’s mom)
Please continue to