Heart Hero of the Month September 2022
Story by, ❤️Parents Ashley & Brady
Our journey started with excitement, anticipation, and joy. It only took a matter of weeks before our feelings quickly changed to worry, stress, and fear. It’s strange how fast, and slow, time goes when your mind is racing over every issue, but yet be so focused on overcoming the problems at hand. There is no way else to put it other than it’s a grind. Building a family is a time that should be filled with pure delight and happiness. Especially when it’s your first child you are welcoming into this world. For us, however, God had a different plan.
It started out with a rare umbilical cord connection with the placenta, and to be honest the best way I can describe it is that it wasn’t attached in the center. That right there placed us in a small percentage of
pregnancies. We thought it was no big deal and everything would just carry on, and we even thought it was sort of cool to be in an exclusive category. Then a few weeks later we went to look at our child’s heartbeat. That’s when things got very real very fast. There was hesitation in our doctor that had us worried, clearly, she could see something that was unique. We were new parents so we didn’t know what to even be looking for. So before we even knew what was going on, we had an appointment set up with a specialist, and that’s when we were told that our baby had a very rare congenital heart disease known as Truncus Arteriosus. We’ve now entered from rare, to extremely rare by combining our already diagnosed placenta aspect. Less than 1 in 10,000 babies are born with Truncus Arteriosus. This amounts to a .010% chance of having a child born with Truncus Arteriosus, and that is mind-blowing to think about. With this diagnosis, we were met with extensive appointments to monitor Tatum’s weight and growth, and begin to build the plan to save her. Without surgery this condition is fatal, and that’s a scary thought to think about and even type/say out loud, but it’s the truth. So many tough conversations were had for mom and dad, both with each other, our families, and the doctors. Unfortunately, you have to have these tough conversations over and over because you have to explain to everyone that cares for you. Tears were definitely shed, and it’s just because we wanted everything to be okay. We wanted Tatum to be okay, to have every opportunity we’ve had. I think that is what all parents want for their children is just to have opportunities.
Little did we know the impact Tatum was planning to have on our lives.
It was at our 36-week ultrasound we found out that we’d be having a baby the following week as the doctor didn’t see signs that Tatum was growing enough inside of mom. So wouldn’t you know it our little Tatum surprised us earlier than we expected and brought the party to us on St. Patrick’s Day.
March 17th, 2020 will forever be a day full of memories.
Even though we only got to hold Tatum for a short time, dad can still picture the genuine happiness on mom’s face as she held Tatum for the first time. Mom was looking at Tatum like she had never seen something so perfect, she looked with pride and delight that was so pleasant to witness for dad. Tears were shed again, but for a brief moment, these ones were the happy kind.
Not soon after Tatum’s battle was about to begin, and we knew that we all had a job to do. After our brief cuddle with Tatum, the team of doctors and nurses went to work. It was about an hour or two before Tatum was in the glass tube; the kind that looks like a giant container you place inside the vacuum tubes of a bank’s drive-thru. Cords, wires, and monitors were all fastened on Tatum and she was quickly transported to Children’s Hospital via ambulance. Dad followed her down to Children’s Hospital where a team of doctors did their first echo of Tatum’s heart. An echo is a better ultrasound, but for the heart specifically, and this would become a regular instrument that we would use for Tatum.
At this point in time, it was weird, almost an out-of-body experience for the parents maybe. You have your first child, but you can’t hold her and you don’t have the privacy to be a family. Instead, dad remembers how fascinated the team of doctors was getting to see and learn about Tatum’s case. Not even a half day old and Tatum already has people talking about her. It was tough for the parents to separate like that, tough for dad to leave his first daughter unattended in the NICU, but dad wanted to check on mom and fill her in. Dad came back and got mom a breakfast feast she very much deserved. They shared a night full of joy, worry, and anticipation for the next steps to come.
No amount of planning, research, and conversations can really prepare you for the battle you face during the surgery and the recovery. Surgery day is extremely difficult for parents. Having spent a week with Tatum in the NICU we were getting more attached to one another. It was so incredibly hard to leave her alone on the nights we didn’t sleep in the hospital room with her, but you have to make sure you are caring for yourself as well. When we took Tatum down to the surgery area emotions came in full force. Again the unknown is staring you down and you’re not sure what will happen. Once we gave our love to T, we were placed where all parents are placed, in a tiny room with a tv and a phone. One of the coolest parts was a journal that was kept in this room. It’s full of stories from previous CHD families. Each person writes some words and they write their child’s name and the condition. We wrote ours and took a picture, and hope it provides comfort to future families that are impacted with CHD. The phone rings when they make the first incision and they provide some updates along the way, and it seemed like everything was going great. Then the minutes grew and we didn’t hear back for some time. Dad, being the worrier he is, left the room to ask for some guidance and we discovered that they wanted to monitor what’s known as “leakage” in Tatum’s heart. Ultimately they didn’t want to close her chest up without being sure her heart would be okay handling the leakage. So, they made the decision to leave her open until they could make that call. This was the hardest part of the path, it wasn’t the fact Tatum’s chest was left open, but seeing how swollen every limb and aspect of our perfect little girl was left it unbearable to see.
Tears came out of mom and dad’s eyes like never before. It’s an awful feeling to see those you love in discomfort, and you wish that you could take the pain or discomfort for them. Yet despite the constant flow of tears, conversations were had with our doctors to ensure we did everything we needed to do for our warrior. Made sure we understood everything and what we can do to help overcome and get Tatum healed. That was always the mission. That day, and the days after surgery, were the most difficult. But babies are tough. And Tatum came from two tough parents, and she showed each and every nurse there that she was going to beat any obstacle that came her way.
So, after 27 days the Hohl family was able to go home for the first time. Again, we can’t emphasize how long, but short, those days felt. We came in together, and we were leaving together.
Only a week went by before we were back in the hospital for about a week or so because Tatum’s incision became infected soon after being home. It was tough to accept the fact we had to go back to the hospital, but we got through it again. As a family, and as a team.
It’s so easy to blame others, feel sorry for yourself, or question “why us” for being dealt difficult hands, and that’s why it’s so important to stick together. Remaining positive through any situation and leaning on those that you are able to. Whether that is friends or family. In our case, we had to lean heavily on each other because this was peak Covid. Only one of us was able to see Tatum at a time in the hospital, and we weren’t allowed to have family come to visit or for us to take her to family. There was certainly a sense of isolation and desperation for social interaction at times, but we stayed positive. It wasn’t easy, but we got through it.
We discovered an amazing group of people connected within the CHD community. Particularly within the organization, Heart Heroes. Today we are grateful to be a part of such an amazing organization that stands together and is always willing to help. It means the world to us to hear from other families about their experiences. It shows that we are not alone, and we want to stress that to the other families as well. You are not alone. Unfortunately, this battle against CHD will continue longer than most of our lifetimes. But there are great people fighting CHD and if you are a part of the Heart Heroes group then you are one of those individuals.
“The superhero cape that Tatum has today represents every child and family that has been affected by CHD. To us, it means that no matter what, our family, friends, Heart Heroes, and everyone involved has Tatum’s back.”
We will cherish every moment together, we’ll tackle the tough ones, we’ll celebrate the best ones, and we’ll continue to push towards the opportunities that we seek. Through it all, we need to stick together and live in the present moment. Words can’t describe how grateful our family is to be where we are today.
Today Tatum is 2.5 years old, and she is a ball of energy. When she isn’t asking to watch “Finding Nemo” she’s rummaging through our cabinet looking for snacks, or cookies. It’s hard for us to picture a world without her. We truly believe that everything happens for a reason and that God gives his toughest tasks to those that can handle them. Everyone that has been impacted with CHD directly, or indirectly, has been dealt a difficult hand, but we are all on the same team and we can overcome anything as long as we stick together. We don’t know what the future holds, but we have more opportunities every day with the help of Heart Heroes, our family, and our friends. It’s extremely important for us to reiterate and help other families that are going through the struggles and experiences that we faced. We’re here for you all, and we’re here to tell you things will get better. Living in the moment isn’t the easiest thing to do, but one
message Tatum’s dad constantly told Tatum’s mom is,
“We are exactly where we’re supposed to be.”
The last thing we’d like to mention is a giant THANK YOU to the medical teams we have been connected to. Words don’t do it justice, but we hope they know how grateful and appreciative we are of their hard work. The doctors, nurses, and entire staff from Women’s Hospital and Children’s hospital are amazing. They continue to offer support no matter the circumstances. They put others before themselves, and they are helping with as much force as they can. They have good days and they have bad days. No matter the situation, they lace up their shoes and head to work, into the unknown with one goal in mind and that’s simply to help. To help adults, teens, and children no questions asked.
Babies are tough as nails. And heart babies, well… heart babies are warriors!
To learn more about Tatum’s Diagnosis – Truncus Arteriosus –
https://www.heart.org/en/health-topics/congenital-heart-defects/about-congenital-heart-defects/tr
uncus-arteriosus