Friday, February 10, 2017

Our Story of CHD and Heterotaxy

I remember the day very clearly. The day I heard "abnormal looking heart".

I was driving to work. My flip phone rang. (Flip Phones!!)

I clearly remember sitting at the light on Alma School Rd, where I would always turn left to drive into Fiesta Mall on my way to work every morning. It was just another day with the shiny diamonds. I was pregnant and happy. We had just found out it was a girl.

"Mrs. Edges - We need to schedule you for a level 2 ultrasound."

"Uh....what's a level 2 ultrasound?"

"Well the baby has an abnormal looking heart, so we need to get better quality pictures."

"What in the hell does that mean?"

I really have never stopped saying "What in the hell?" and we are into this a decade now.

They scheduled me for the level 2 about 3 weeks later. I had no clue what a "high risk OB" was then.

Kevin had to work, so my Dad graciously came with me for the level 2. I layed on that table for 3 hours. 3 hours of doctor after doctor coming into the room with a different tech. Obviously something was majorly wrong. All I got from that appointment was "The heart is severely malformed. We will get you into a pediatric cardiologist."

I had no clue what in the hell heart defects were. I had a nephew with a heart murmur, but it was no big deal.

Once my Dad and I left the doctors office, we called everyone. He called my Mom, and I called Kevin. We went back to Kevin and I's apartment and I cried. My Dad cried. My Mom showed up and soon after Kevin did.

I asked Kevin "Why are you home?"

His response "Something is wrong with my girl. Something is wrong with our baby."

We had already decided on her name - Alexandra Mae Edges. My Mom wrote her full name on a half a piece of paper and below wrote "We all love you." and put it on our refrigerator. I remember praying over that piece of paper every day.

On May 1, 2007 we finally saw the pediatric cardiologist. He gave us her full diagnosis of Heterotaxy, Single Ventricle with Common Atrium, Transposition of the Great Arteries, Pulmonary Stenosis, Interrupted IVC, and nearly discontinuous pulmonary arteries. She would need a series of 3 heart surgeries. The mortality rate for her condition was 80% in the first year of life.

A week later we met with the cardiothoracic surgeon. His words exactly "This is going to be hard. She will have a very difficult time. This will change your life completely. She may die. But if you want to do this, I promise you I will do everything in my power to help save her life."

"Dr. Pearl if you told me she would die the moment she came out of me, I would still give birth to her She is my daughter. I will do whatever I have to."

Fast forward a decade, and she has been through 5 heart surgeries rather than 3. She needs a combined heart/liver transplant, but has been denied 3 times for it. We travel out of state now for her care. She has developed severe scoliosis and lives most days in pain. Yet she smiles. She thrives. She is in 4th grade. She hobbles when she walks but she does it with such gusto. She has a tube in her stomach to help her get enough calories to have a good quality of life.

This morning she asked me if I wanted her.

"Alexandra I would do this billions of times over and over again to have you. I didn't lose when I became a Mother to you, I gained the most important lesson I will ever learn. You gave me the perspective I always needed to have. You brought me to where I was meant to be. An educator, an advocate - but more than anything you made me a Mommy."

Alexandra Mae Edges I will go to the ends of the Earth for you. You never have to doubt my love for you. As long as there is breath in my lungs I will fight for you and for children and adults like you everywhere.


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