 💜 written by Mindy Barber, Brodie’s mom
This is our CHD journey about faith, hope and love. Our family lives in Papillion, Nebraska. My husband has served in the USAF for 15 years. I used to be employed in the social work field, but now I am a stay-at-home mom. We have a beautiful and healthy five year old daughter named Zoe. Our precious Brodie was born on March 6, 2017 at Bergan Mercy Hospital in Omaha. My pregnancy with Brodie was no different than with Zoe. All my well visits always came back normal throughout my pregnancy. We never had any signs that something was going wrong with his development and my labor and delivery went perfect. They told me I had given birth to a beautiful, healthy little boy.
Ten hours later, Brodie’s pediatrician came in and she told us something that would change our lives forever.
She told us she heard a very strong murmur and Brodie needed to be taken for an echocardiogram. She told us not to worry because heart murmurs were common in newborns. However, a couple hours later, a nurse walked into our room and told me to answer the phone because Children’s Hospital of Omaha needed to talk to me. I knew in that moment it was bad news and I didn’t want to pick up the phone. I cannot explain the pain and heartache I felt as I listened to the nurse. I couldn’t even comprehend what she was saying because it was that unimaginable to me that this happened to my baby boy. The nurse proceeded to tell me that Brodie was born with severe Aortic Stenosis and his aortic valve was 60% blocked. The transport team arrived minutes later at the hospital where I delivered Brodie. I felt so helpless as his mother as they loaded him up into the transport unit all by himself and hooked him up to multiple wires. As he cried, I couldn’t soothe him. My husband left with him as I was unable to go because I hadn’t been discharged yet due to just giving birth hours prior. In a matter of hours, our emotions changed from joy to heartache and left us wondering and praying if our son was going to survive.
Eighteen hours after his birth, he was admitted to Children’s Hospital of Omaha under the care of Dr. Christopher Curzon. God couldn’t have given us a better cardiologist to walk us through this new journey we were about to embark on. He was not only amazing for our precious son, but for us as well. As parents walking blindly, he was the hand we needed to guide us. On March 8th, at three days old, my husband and I had to walk Brodie down to surgery. We were forced to put all of our faith and trust in a surgery team that we didn’t know, but we prayed they would save our son’s life. Brodie was taken for a heart catheterization procedure. They performed a balloon aortic valvuloplasty which lowered his aortic pressure gradient from 80 mmhg to 35-38 mmhg. The procedure was a success because it bought us time. On March 16th, ten days after the birth of our son, we finally got to go home and let Zoe meet her baby brother. Brodie’s pressure gradient improvement didn’t hold for long. On April 27th, we had to go back to the hospital to have another balloon valvuloplasty which was followed by a blood transfusion the following day due to blood loss during the procedure. The results were only a mild improvement, which was devastating because we knew this meant open heart surgery would be the next course of action.
As much as you pray for time to slow down, it doesn’t. The day had arrived that I hoped would never come. Brodie needed to have open heart surgery to fix his tiny heart. I had to believe that since God brought us to it, he would bring us through it. On June 2nd, at only three months old, we had to hand our baby over to undergo open-heart surgery, the most difficult thing a parent should ever have to do. The hardest moment for me was when I had to lean down to kiss him for the final time and then watch them wheel him away down the long white hallway, the hallway where a piece of my heart is left every time we walk it. We chose Dr. James Hammel to perform the Ross-Konno procedure on Brodie. I was confident in his surgical ability as I had done my research and everything told me he was the best in our area for the Ross, even though he had only done a handful of these procedures. The surgery took seven long hours to complete. It felt like weeks sitting in that small waiting room. After a long day, Dr. Hammel came in to our room and told us that he was very pleased with the results. We couldn’t have been more relieved and grateful to hear those words!
I thought as parents we had endured some of the most traumatic moments in the days prior, but nothing would be more traumatic for us than June 3rd. The next morning after his open heart at around 10:00 a.m., the doctors had just completed their rounds and all thought Brodie was progressing well. I was just about to lean down to give him a kiss before I left to get some breakfast because it had been a long night. All of a sudden, out of nowhere, he had a cardiac arrest. We thought it was errors with the sensors attached to him but it became real as I saw his eyes roll back and he immediately began to turn pale. Before I knew it, there were ten or more medical professionals surrounding my precious boy as I watched him lay there so helpless.
All the while the alarm from the Code Blue was sounding louder and louder to me. I collapsed to my knees outside his door and began begging God to not take him away from us. One of the most remarkable and moving moments I will never forget in such a horrific moment was other families in the NICU that day. They stepped out of their doorways from their rooms with their own children and began to pray alongside me for Brodie. Brodie left this world for twenty long minutes. The longest twenty minutes of my life. Our son never gave up! He is a fighter! The staff at Children’s Hospital of Omaha performed unbelievable CPR where Brodie never lost oxygen to his brain during his entire code. After twenty minutes they got a slight heartbeat and he was then put on ECMO. I truly believe it was the power of prayer and an amazing medical team that saved our son’s life that day.
Brodie was on ECMO for three days and once again fought his way back. During those three days we happened to receive a Heart Hero Cape. It couldn’t have come at a better time because to us it represented courage and strength. He remained in the ICU until June 19th. I was never more thankful and blessed to take my son home yet again.
Brodie’s heart held for a little over a year with no intervention needed. We made sure to make every moment count. We took a trip to Florida. We went to Disney World and took the kids to the beach for the first time. We bought a camper and went on many weekend adventures. We went to parades, carnivals, many zoo days, splash pads and spent countless hours at grandma’s pool. During the fall, we made sure to spend many days and nights at Vala’s Pumpkin Patch. This journey has taught me that time is a gift and no day is guaranteed.
On September 26, 2018 they decided that Brodie’s heart had built up to much calcification in the donor pulmonary valve and he needed to have a stent put in. We had to walk our precious son back down that same hallway. Once again, a piece of my heart was left there. Dr. Curzon put the stent in and was done a couple hours later. He was very pleased with how the procedure went, but in true Brodie fashion, everything didn’t seem as great the next day.
The next day they found out from the chest X-ray that the stent didn’t stay in place. It shot out like a watermelon seed and went into his pulmonary artery. They decided it would be best to leave the first stent in the artery if it was positioned correctly and had Dr. Curzon put a new stent in the pulmonary valve. We ended up leaving with one more stent than we wanted, but Brodie is still fighting on with a smile.
Brodie turns two years old on March 6th. Even after everything he has been through, he is such a happy little boy. He loves his sister and she loves him more. He loves playing with construction vehicles, airplanes, monster trucks, watching Blippi, swimming, playing outside, building towers with his blocks, swinging, coloring and most of all he loves for you to read books to him. He is so smart just like his sister. There isn’t a day that doesn’t go by that I don’t ask God why this happened to him. Why does this perfect and innocent child have to endure a lifetime of open heart surgeries, catheter valvuloplasty interventions, and countless cardiology appointments? This journey is not easy and I know it is far from over. Brodie is already projected to have another open heart surgery later this year to replace his pulmonary conduit. But the one thing that has amazed me the most on this journey is the resilience and fight my son has in him.
He is our fighter. He is our Heart Hero. He is Brodie Strong! We love him so very much!!