“As we sat in silence on the drive back from our first meeting with our pediatric cardiologist, I knew our life would never be the same. ‘Your son will need open heart surgery’ played over and over again in my head. The entire life I had planned for this tiny human I had been growing for 23 weeks had ended before it even started. My husband Jim and I always wanted a family – and we were so excited to be able to give our daughter Maddie a brother. My dreams for my son’s future had now been overshadowed by the fact he would be born with a broken heart.
Hearing your child has congenital heart disease is a devastating blow. How did this happen? What did I do wrong? I questioned everything. The guilt was immeasurable. I stopped posting about my pregnancy on social media. I didn’t buy anything baby related. I almost tried to ignore the fact I was pregnant all together – because the pain of knowing I wasn’t having a healthy baby was too much to handle. Being thrown into the role of a ‘heart mom’ isn’t something anyone is ready for, and nothing can prepare you for it.
When Max was born by c-section on July 25, 2018, every awful feeling I felt during my pregnancy came to a screeching holt when Max came out screaming. He was a little blue, but he was alive. My fear of him dying now became the energy I had to fight for his life. I got a brief look at him before they immediately transferred him up to the Pediatric Cardiac Intensive Care Unit. After his first echo they confirmed his diagnosis: DORV and VSD. Our team was hopeful that after a PA banding surgery now to prevent his lungs from flooding and a full repair surgery between 6-12 months he would go on to lead a fairly normal life. My son’s life wasn’t over. My baby had a chance!
At 12 days old Max had his first surgery and became a member of the ‘zipper club.’ I should have been home recovering from my c-section while holding my newborn, and instead I was handing him over to a surgeon not knowing if I would see my baby alive again. Nothing could have prepared me for seeing my newborn laying there sedated, on a breathing tube and sliced down his chest with more tubes and wires coming out of him than I had ever seen come out of anyone. Surrounded by machines and beeps that drowned out my thoughts, I couldn’t understand why such a tiny baby had to go through so much. At one point Max’s heart rate dropped dangerously low and everyone sprang into action trying to stabilize him. One of the doctors stood next to my husband and I who were watching in horror trying to explain things to us. Out of all the things she told us, I only remember her saying, ‘Don’t worry, he’s going to be okay.’ I nodded when she said it, but in my head all I could think was, ‘NO, my newborn just had heart surgery, none of this is okay.’ No amount of research on CHD could have ever prepared me for the reality that was now smacking me in the face.
Max recovered surprisingly well after that and was discharged less than a week after his first surgery. It was more nervewracking than exciting to take him home. Every normal worry a parent has is magnified when your child has CHD. Max’s heart defect caused him to have lower oxygen saturations than a healthy person and because of that his skin was always a little on the blue side. He would breathe very fast and struggled to take a bottle. I was overwhelmed with anxiety trying to keep up with the demands of a sick baby and a very hyper 2-year-old. The joys of newborn snuggles were infested with worry and nothing felt normal.
The first 3 months of Max’s life after his PA band surgery brought us multiple hospital visits, and a gtube because he struggled to take a bottle. It was a delicate balancing act to keep Max in a safe place by giving him medication around the clock and keep up appointments with his cardiologist. We had 43 precious days at home, broken up in between our hospital stays. This was giving Max a chance to grow as much as he could to help his repair surgery be a success. Even more special to us, was giving time for my husband, myself, Maddie and Max to try to be a family.
In October of 2018, Max had an unexpected open-heart surgery that changed everything. A routine appointment with our cardiologist ended with, ‘He has no blood flow through his mitral valve. He’s going to need surgery as soon as possible.’ I didn’t even have time to process Max needing open heart surgery again before we were rushed to the hospital by ambulance. I felt completely numb. Max’s surgery the next morning was longer and more complicated than anticipated and he came back from the OR with an open chest covered by a thin yellow film. I cried seeing his tiny heartbeat under the film and wondered why things had to be so hard. What did Max do to deserve this? When do we get a break?
His chest was closed within a few days and I breathed a sigh of relief. Soon after that Max became very sick very fast. The doctors told me he had developed a dangerous infection and his chest needed to be reopened and cleaned out. I cried over his crib when he came back from the operating room again, reintubated, blue, and with a row of staples down his chest. Every time I thought things couldn’t get worse, they did.
It was soon discovered in the weeks after surgery that Max’s heart function was very poor. We prayed hard his function would come back with time and heart failure medicines. Some of our doctors remained hopeful he would recover, but with every echo came more disappointment and no improvement. How could this be happening to us? How could things be this bad? Life was going on around me while I sat watching my son slowly die and there was nothing I could to make it better. Our cardiologist sat us down and told us she believed Max’s only option of survival now was going to be a heart transplant. After a few agonizing weeks of paperwork and planning, Max was transferred to UF Shands Children’s hospital to pursue a transplant.
On December 14th we arrived at our new hospital, nervous for what Max’s future held. We met with the transplant team and they told us Max was not only a candidate for a transplant, but they wanted to give him a Berlin heart to help sustain him while we waited. The idea that my son would have an artificial heart while he wanted for a transplant was a lot to swallow. How could my sweet smiling 5-month-old be this sick? At times I questioned the decision to list him for a transplant – but we had to give him a chance. He was still fighting hard, and we refused to give up on him.
Max was rolled down to the OR on December 19th and was returned us attached to a giant blue machine. Two cannulas were coming out of Max’s stomach that attached to his heart. It seemed like science fiction, seeing his blood pump outside his body. This was my son’s chance to stay alive long enough to get a new heart. How thankful I am that we live in a time where there are options for babies like Max. The Berlin heart provided Max with the gift of time – and in the world of CHD, time is the fleeting and never a guarantee.
We have been waiting for Max’s donor heart for almost 5 months now. It’s not been smooth sailing and Max has proven himself to go against all the norms. He’s been unable to get off oxygen support and he can’t take a bottle. Some days I wonder if I made the right choice for Max. Seeing him bound to a hospital bed and struggle so much even with his Berlin heart – it’s torture. I can’t pretend that even when I see him smile at me, it breaks me knowing my son is so close to death. Knowing that so many people don’t survive the wait. I’m not ready to bury my baby, but every day that passes I wonder if that will become my reality. It is difficult to imagine him making it through this alive, but somehow manages to pull through time and time again. His resilience is astounding. Every day I wonder – is today the day we get the call there is a heart for Max? Is today the day my son gets a second chance at life?
According to the Pediatric Congenital Heart Association there are over 300 pediatric candidates awaiting heart transplants and Max is one of them. Throughout this journey all I can think of is the incredible gift one family will give my son the day they say YES to organ donation at their lowest point. Organ donation is giving kids like my son a chance to grow up. Organ donation is the most beautiful thing that can come from the darkness of losing a child. To every donor family out there, I hope you feel all the love and gratitude in the world for giving other children a chance to beat the odds.
Our journey with CHD and now a heart transplant has been the hardest thing my family has ever gone through. I could have never imagined when we first found out about Max’s condition that it would lead us here – on day 145 of waiting for a heart transplant and hospitalized for 249 days since Max was born. CHD has taught me to be grateful for every day, and cherish even the smallest milestones. Little things are big things! Max’s strength to survive is inspiring so many people and I’m so proud to be his mom. Every day he is alive is a day to celebrate! As hard as this all is, we still have all the hope in the world we will get to bring home our beautiful baby one day, all thanks to the generous gift of a donor family.”
UPDATE: On August 19th, Max got his new heart after 8 months of waiting! He is doing well and is close to being discharged from the hospital after over a year hospitalized!
This story was submitted to Love What Matters by Cristina Schneider of Celebration, Florida. You can follow Max’s journey on Instagram, Facebook and learn more about his progress here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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