‘No, not my child… wait, wait, wait. WHY US, WHY NOW?’: 2 families, 9 children, 3 congenital heart defects

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“When I hear of CHD (congenital heart disease) I think of little babies. I think of the defects caught in utero, after birth or maybe toddler years. I even know about some of the life-saving surgeries that must be done for that child to survive and thrive. I thought we knew a lot about the faces of CHD…

Until sitting in the Vanderbilt Cardiology office with our 14-year-old, teenage daughter, on March 13th, 2018.

World Of Broken Hearts/Suha Dabit

We have been walking this walk for the last 12 years with our dear friends Ashley and Zack as a major support system for them. When I say dear friends, I mean they’re practically family.

Let me give you some history:

Ashley and my husband Greg have a friendship that spans from kindergarten through college.  Ashley and I were sorority sisters and college roommates. Zack and Greg were fraternity brothers. We were close and all together. My husband Greg grew up with family friendships I always admired. We wanted that for our children. Not realizing God’s plan, He had put us on that same path with this crew.

Darci Caesar

Ashley and Zack went to North Carolina after college in Memphis and Kate was born October 2003. Greg and I stayed in Memphis and Anna Grace was born 6 months after Kate in March 2004. They were best friends from the start. We then announced we were moving to Mobile, Alabama. And that exact same visit home Ashley and Zack announced they were moving back to Franklin, Tennessee. We were laughing at our timing. Adventures for both families.

Not long after they moved back to Tennessee, Ashley became pregnant with their second child. She had scans and the doctors thought their child may be born with Down syndrome. Ashley was a Special Education teacher, so I knew if anyone was equipped, she would be amazing.

I remember being on the phone when she was in the hospital with the baby boy they named William ‘Jake.’ We were all anxious and wanting updates since we were so far away. Ashley said Jake was a strong and healthy baby, with no health concerns. We were all excited for their new little addition.

They all settled in to a new baby and on the ninth day home, Ashley thought Jake was acting funny, fussy and just not right. They had a family friend coming by to visit and instead went to the hospital. WHY she decided to go to the hospital we think is a true miracle. Jake was taken into the hospital and was transferred to Vanderbilt Children’s Hospital in Nashville. His little body was going septic. He was suffocating because his aorta was pinched and blood could not flow through to his lower half of his body. He was rushed into heart surgery at 11 days old with a diagnosis of Coarctation of the Aorta with a Bicuspid Aortic Valve. This was our first introduction to Congenital Heart Defects. We understood the procedure for Jake and understood the life long restrictions. No contact sports, yearly checkups, and a lifetime of monitoring. He was strong and came through well. He has his battle scars, but he is a fighter.

Darci Caesar

Greg and I were blessed with John Patrick 6 months later in Mobile, Alabama. Being so close in age to Jake, we were excited for them to have each other as buddies.

In 2007 we had the opportunity to move back to Tennessee. We were thrilled! Things were normal for our two families in different neighborhoods and schools. Ashley had retired from teaching to stay at home. I started Real Estate and along came baby #3 (Cooper) for Ashley and Zack, and then Greg and I were pregnant with our #3 child too (Charlie). Ashley and Zack had outgrown their house and put their house on the market. It sold and they needed a house in a flash with their growing family. The house behind my backyard was EMPTY and not even on the market. The dust settled and they bought the house right behind our house! We could never have never guessed that would happen. It was great — the kids could play, summer nights outside, cookouts, and Baby #4 (Bo) for Ashley and Zack came along.

The kids now all attended the same school, the same church and play all together in our yards for hours and hours. Our kids had the friends I had always admired from Greg’s youth. It was our little ‘Mayberry.’

Darci Caesar

In 2012 Ashley and Zack announced they were pregnant with child #5. We all giggled! Since Jake’s diagnosis, Ashley’s pregnancies were closely monitored for cardiac issues. They had kept up with each child and Cooper and Bo and even young Kate were all cleared. At the 20 week appointment for baby #5 they received the news that this child only had half a heart. This little boy, to be named Caleb, was diagnosed with Hypoplastic Left Heart Syndrome in utero. It was then that we realized why God had put them in our BACKYARD. We were there to help them walk through this traumatic Congenital Heart Defect. His heart was only 2 ventricles. How would it function? How would he survive? How was this the absolute crazy odds of another cardiac child? We all prepared for the surgeries and understood the plan for his care.

Ashley and Zack prepared as much as you could, and 5 months later Caleb was born April 2014. At 6 days old he underwent the Norwood surgery. Along with Caleb’s first major surgery I found out I was pregnant! By now we were all belly laughing! God truly wanted Caleb to have a friend. With Ashley in the hospital and Zack tag teaming his time from home to hospital, I would take care of the other children. Caleb went on to have the Glenn Surgery at 3 months old. This surgery would keep his heart working in it’s rerouted form while his body grew; knowing he would have to be closely monitored and would outgrow the surgery and need another.

Darci Caesar

January 2014 our precious Mary Claire was born. She was a light in the times of Caleb’s surgeries and we all celebrated for a GIRL! We knew she would be the perfect friend for Caleb. During all this time, this story does not even touch all of the complications Caleb had for every surgery and additional surgeries he had. The Cardiac Caths, the craniotomy, the countless x-rays, tests, blood work, etc. This was a severe Cardiac Heart Defect and was a new level of complication.

In 2016 it was time for the Fontan surgery for Caleb. It was the last major surgery of the 3 to reroute his heart and keep it functioning with a single ventricle. We had all become quite educated in cardiac terms, care and medicine, and we had it down pretty well. The surgery took place and then 6 months later we found out that the surgery was not successful for him. His heart was failing, and he may not be a transplant candidate.

What do you do?! You literally don’t have a choice but to watch your child die or hope there is a way he can get on the transplant list and receive the greatest gift someone could give. This is the real-life truth of parents watching their child who can’t be helped anymore.

Darci Caesar

Spring of 2017 Caleb’s heart was failing and he was a very blue shade pretty much all the time.

He had a regular appointment and Cath scheduled for the end of May. That was the time he didn’t return home… Caleb was placed on the transplant list and was to remain in the hospital until a new heart was found. It took this situation to a new level!

We knew it was clear why we were so close. We realized it was God’s plan to put us in each other’s backyards to help through these times. When Zack was not at home, I was taking care of our 8 combined kids most of the summer. I had a meal plan website up and running that coordinated meals, hospital trips, yard work, everything. I was the Director of Ashley and Zack’s village that kept things going, kept kids on schedules, kept them fed and loved. It was a big task, but I knew if the roles were reversed they would be there for us. But it wasn’t all smooth roads. Things would get tense, emotions were on roller coasters, and I can still remember Ashley getting upset and yelling, ‘You are 99% in this!’ She was right. Greg and our family were there in the trenches with them taking care of the rest of the family while they were in the hospital.

Darci Caesar

September 2017 Ashley and Zack received the phone call and Caleb got his heart that he was waiting for. After weeks of recovery, on the 1st of November, Caleb arrived home. We all were so pleased he was home, healthier and starting the road back to being a 4-year-old who just loves hockey. He battled and showed others their own strength – we all had fallen for the little blonde Caleb who taught us even more about the world of Congenital Heart Defects.

We were ready to help make a difference and cheer on CHD Awareness.

Darci Caesar

If February 2018 my husband hosted his company’s Global Sales Meeting in Nashville. He was in charge of the big event and wanted to do something to honor Caleb and the Children’s Hospital that meant so much to all of us for their cardiac work. Greg asked Ashley, Zack and Caleb come talk to his company about being a patient, the surgeries and awareness of the defects. See– we were all seasoned veterans, I like to think. We have walked through and knew the struggles of the whole family through two Congenital Heart Defects.

So you can only imagine one month later, on March 13th 2018, our complete shock — sitting in the Vanderbilt Cardiology office with my husband Greg and our 14-year-old daughter, Anna Grace.

Nooooooo, not my child… wait, wait, wait.

Good Golly Photography

Anna Grace is very active, a good student, healthy, happy and fun! She is a competitive dancer, enjoys summer swim team and pageants (holding the title of Miss Teen Williamson Co. Fair 2018) Just like any other 14-year-old girl.

Anna Grace didn’t have any symptoms. She didn’t have any signs that were screaming there was an issue. I thought we knew about these defects. I thought we were safe with all my children born and checked off with perfect health.

Darci Caesar

Anna Grace was up to date on all of her yearly doctor appointments, shots, sport physicals, etc.

There was never any feedback or results showing anything was even remotely alarming. She had been our picture of health.

Darci Caesar

Anna Grace had been telling us of some chest pain that was bothering her for a while now. (She is a dancer and muscle pain is not abnormal.) Greg was vocal and said we needed to get her an appointment. I took Anna Grace to the pediatrician and the doctor heard a murmur. (which is not uncommon, so we still didn’t get alarmed). That was the first time anything was mentioned. Sitting in the cardiologist’s office 3 days later with an ECHO they explained that the muscle pain was to be treated with Tylenol BUT they found something unrelated… a hole in her heart, and it needed to be fixed with open heart surgery.

WHY US, WHY NOW? The words from a friend still hear ring in my ear… ‘Listen HARD to your teens.’ Do we do that? Did this just appear? How many doctors have ever seen her? There were no red flags and there were no other options for her. Anna Grace was diagnosed with Transitional Atrioventricular Septal Defect.

World Of Broken Hearts/Photographer Suha Dabit

There was heavy guilt that came along with this for my own daughter. Was there something we missed early on? Was I missing her saying something I was supposed to catch? We had been around cardiac issues and nothing prepared us for a teenager with NO PRIOR symptoms.

World Of Broken Hearts/Photographer Suha Dabit

What do we take away from this journey? We try to piece it all together and see the LOVE, the FRIENDSHIP and HIS plan that was bigger than our own.We would have never imagined this would be our story. Best friends living behind one another, raising our children, and 3 out of the 9 have Congenital Heart Defects. Each very different and bringing us new knowledge along the way.

Congenital Heart Defects can be discovered anytime to anyone.

World Of Broken Hearts/Photographer Suha Dabit

Anna Grace had a successful surgery and we are thankful we caught this before it was too late. Anna Grace could have been another statistic of a high school athlete’s death. She could have had other severe complications as she got older. We are thankful we have an amazing surgeon and medical staff that fixed her heart as good as new. Yes, she will always be a cardiac patient now, but we are joining this fight to make a difference.

The World of Broken Hearts and the Brett Boyer Foundation are making great strides for CHD.

We hope to bring awareness of ALL AGES to the fight.”

Darci Caesar

This story was submitted to Love What Matters by Darci Caesar of Franklin, Tennessee. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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