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  • Writer's pictureKaty Key

The Heart World

The heart world. 1 in 110. A world full of scars, surgeries, infections, and miracles. Most people will never experience it, but we did.

You never think your child will be the one. We never did. I remember going to our first ultrasound in Seymour with Colton. My husband and I were so excited to find out the sex of the baby, just like most first time parents! We laughed all the way, talked about getting lunch after, and wondered the all important question of boy or girl.

We walked into the small hospital's ultrasound area, and waited. Right away, we found out he was a boy. We didn't pay much attention to how long the ultrasound took (around an hour). As first time parents, we just assumed it was normal. We also weren't alarmed when the doctor said she wanted to talk to us about something she didn't see on the ultrasound. What could possibly be wrong? I was 27, healthy, and started taking my prenatal vitamins several months before trying to have a baby; so everything should be fine!

Of course, there was something wrong. Dr. Freyre said that she didn't get the pictures that she needed of the heart. She would, "Like us to go see a specialist (MFM) in Indianapolis to do a more detailed ultrasound to clear everything up."

Jordan was fairly calm. He figured it was routine, something that happened often. I was nervous. But I'm also a worrier, so I tried to brush it off that all would be fine. Even my friends and family told me that I was overly worried, and that they knew tons of people who've had this happen, and everything has been a-okay.

Our appointment came in Indy. The tech did her ultrasound. She looked concerned, and said she was not seeing what they needed with the heart. The MFM came in and told us that our son had one of the most severe heart conditions: Hypoplastic Left Heart Syndrome. He would need three surgeries at the very least, possibly a heart transplant, and he may die during/after any of those procedures. We were floored. This could NOT be happening to us, or to our sweet little boy. The next few hours were a blur of genetic counselors, doctors, and trying to set up appointments for a pediatric cardiologist to look again. And we did. We saw Dr. Darragh, and he confirmed that our child did have a severe heart defect, but not as severe as the MFM believed. He thought that our son would only need 2 heart surgeries, instead of 3. He had Double Outlet Right Ventricle, not HLHS. We felt like a weight had been lifted, and our son had been given a chance.

Colton arrived on March 6, 2015. It was quite the spectacle for a first time mom. I had two anesthesiologists, two obstetricians, two nurses, three students, and an 8 person NICU team at my c-section. As soon as he was delivered, I went to recovery, and he sped off by ambulance to the Children's Hospital next door across the way.

He endured so much during his time here, and so did we. We spent over 70 days on the Heart Floor. We watched our son have one closed heart surgery, one open heart surgery, one pacemaker surgery, a g-tube procedure, and countless blood draws and echocardiograms.

We also saw other people's heart kids. Some that coded while their families stood and cried in the hall outside of their room, and some (like us) who had the awful task of figuring out how life would continue after saying goodbye to their sweet child. But with the sadness, comes hope. I saw so many families who went home. Many whose children are thriving and doing amazing things that they never knew they could do. The heart world is full of sadness and pain, but it is also full of hope and miracles.

At Colton's Kindness, we will not only celebrate mothers of loss, but also heart parents. During the month of February, and throughout the rest of the year, we honor heart kids and families. You and your child inspire hope every day, and we are with you 110% of the way.

Be sure to visit Colton's Kindness' Facebook page to see some amazing Heart Warriors and Heart Angels throughout the month of February.

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