‘He’s still the boy you love dearly.’ We thought he was a happy baby. I had NO idea he fought for every breath.’: Mom welcomes baby with congenital heart defects, ‘He’s a force to be reckoned with’

“From the moment Jake entered this world, it was abundantly clear that he was just so happy to be here. There was hardly a moment that he wasn’t smiling at us or laughing. After our previous pregnancy had ended in a stillbirth due to Anencephaly, we were so happy to have our beautiful rainbow baby arrive! Jake was the perfect addition to our family. For five almost months, he dazzled us with his bright and happy personality; we didn’t know at the time that he was showing us his absolute determination to live. We just thought he was a happy baby- we had no idea he was fighting for every breath.

Jake was born with multiple congenital heart defects that were undiagnosed for the first 5 months of his life. These included multiple holes in his heart known as ventricular septal defects (VSDs), transposition of the great arteries (TGA) with double outlet right ventricle (DORV), tetralogy of fallot (TOF), and pulmonary stenosis. These congenital heart defects or CHDs were missed while Jake was in utero, immediately after his birth, and at each of his pediatric follow up visits. It was missed until Jake contracted RSV just before he turned 5 months old. It was finally discovered by a pediatric ICU doctor who took a special interest in Jake and dug deeper into his tests and X-Rays to discover what so many other Doctors had missed. On December 29th, 2015, we were informed that our beautiful baby boy had fatal heart defects and open-heart surgery was his only chance at living. The news was crushing, terrifying, and opened our eyes to a whole new world. I vividly remember my husband and I simply being held up by each other’s shoulders as we took in the news and came to grips with what was about to unfold. Instantly, I mourned my son’s bright future that we thought he had ahead of him, everything was different now. My baby was going to have to endure the unthinkable, and there was nothing that I could do to save his life, it was out of my hands. Although the next steps were daunting, the doctors were very clear.

Jake would require open-heart surgery at the Medical University of South Carolina, but only if he survived RSV first; he would have to wait approximately 6 weeks to ensure that his lungs were strong enough to handle the operation. After another week in the hospital, we were released to take Jake home with oxygen and oxygen monitors that he was required to wear in order for us to ensure that his oxygen levels did not drop too low. The Cardiologist encouraged us to continue to treat him just as we always had and to remember he was still the same little boy that we loved so dearly, we just knew more about him now. For six weeks it was our job to quarantine Jake and to ensure that he stayed healthy for surgery. This meant we were not able to see friends or family during this difficult time. Our first born, Sophia, turned 3 years old during this time and she was not able to have a birthday party, our lives were on complete hold.

While waiting for Jake’s surgery date, I spent so many nights just holding him and crying. I would stare at my little guy as he smiled at me and made all his baby noises and I would feel an overwhelming sense of doom and dread for the future we now had to face. When the time had come for us to travel to Charleston, SC to prepare for Jake’s surgery, my husband and I were already so physically and emotionally exhausted, we had no idea how we were going to make it through this whole ordeal. We met with the surgeon and they performed a sedated echocardiogram to get a better look at Jake’s heart and his defects. The information they came back to us with was not good. The doctor informed us that Jake’s defects were quite unique in nature and that the overall anatomy of his heart was different.

Instead of him just having to fix the holes and the great arteries, they were also going to have to move and reattach his coronary arteries, which further increased his likelihood of death or going into cardiac arrest on the operating table. Again, we had been dealt another blow. This one scared us beyond belief. We knew things were going to be dangerous and difficult, but hearing the surgeon be so direct and learning of the new defects really tore us apart. We left the hospital that Friday with the weekend ahead of us to try and enjoy what we couldn’t help but think may be our last few days with our son. We played a lot, we held him tight, we recorded his laughter just in case the worst scenario played out. We decided that if it was going to be our last few days with him, then they were going to be fun and filled with good memories instead of allowing the fear and anxiety to overwhelm us and the weekend.

Monday came too fast, and we encountered the hardest thing either of us has ever had to do. We had to hand our beautiful baby boy over to nurses and doctors for them to take him into surgery, and we didn’t know if we were ever going to see him alive again. It was gut wrenching, terrifying, and left us feeling helpless. We had done our part. We followed all the doctor’s rules and kept him healthy and safe and were able to deliver him into the capable hands of the pediatric cardiothoracic surgeon and his team. There was nothing more we as his parents could do for him; it was a hopeless feeling.

We drew strength from each other, from our faith in Jesus Christ, and from the hundreds of prayers from friends, family members, and complete strangers. We felt that we were almost to the finish line with just this one last hurdle in front of us.

Seconds seemed like hours as we sat in the waiting room with our family members. We paced, walked around the facility, tried to eat, but mostly walked hand in hand and in silence waiting on the edge of our seats for every update from the operating room. The surgery was supposed to last approximately 9 hours from start to finish, but continued to draw on much longer, we knew they were having difficulties in the operating room, and all we could do was wait for news.

Finally, at hour 14, surgery was done. The doctor came out to speak with us and let us know that things had gone well and the repairs, although difficult, had been completed. He advised us that Jake would be ok, and recovery should go as expected over the next few days. What he didn’t tell us was that Jake crashed on the table during surgery, but they were able to bring him back to life and complete the operation. Little did we know that the hardest days were still to come.

A few hours into Jake’s recovery, he began and continued to deteriorate instead of improve and had to be medically paralyzed and placed into a chemically induced coma because they were not able to wake him up without him going into cardiac arrest. Jake went into cardiac arrest 3 times within the first 4 days after his initial surgery. The doctors were stunned and had no real answers for us. An additional chest tube was placed on top of the other two he already had, and medication after medication was added until he was up to 14 different ones to try and keep his heart beating.

The final time Jake went into cardiac arrest was right in front of us. We walked into the PCICU to visit him as they were trying to wake him up. We were holding his hand as they reduced the meds that were keeping him in a vegetative state. His eyes opened for a moment, and then rolled into the back of his head. All four limbs went up into the air and quickly flopped back down, then all the monitors turned into steady lines and alarms and about 10 medical personnel rushed to his side.

We stood there and watched as our son lay lifeless in his hospital bed. He had no pulse; his nurse started chest compressions on his fresh surgery scar, the crash cart was wheeled over, and they were charging the paddles preparing to shock him. They injected epinephrine to try and give his body the adrenaline it needed to fight. We watched in silent shock and disbelief the only thing keeping me standing was the concrete pillar I had found myself leaning on for support. Finally, after what seemed like hours, the head nurse shouted, ‘I have a pulse!’ Jake slowly came back, and they were able to get him stable and quickly placed him back into a coma as soon as they could. At this point emotions and words escaped us. We could not truly absorb what we had just witnessed. The doctors came over and told us what happened and what their next plan of attack was going to be. They were going to send Jake for a CT scan the next morning to see if they could find what was causing these episodes, otherwise they had no idea if they were ever going to be able to wake Jake up.

The next morning, we were eagerly awaiting the surgeon’s plan after additional testing. The CT scan showed a narrowing of Jake’s pulmonary artery which was limiting Jake’s heart from passing blood to the lungs for them to operate properly. Because his heart condition had been missed at first, his lungs had developed pulmonary hypertension and this was the issue causing the blood to push back into the heart, causing the cardiac arrest.

The only thing that could be done was to go back into surgery and open up his chest to do one of two things. 1. Open the artery a little so it could function properly, or 2. If that was not possible, they would have to put a conduit in its place and seal off the pulmonary artery. We were hopeful because we had a plan, but still nervous that he had to undergo yet another open-heart surgery on his small body only 4 days after his first.

Once again, we had to go through the process of saying goodbye to our little boy not knowing if we were ever going to see him alive again. Jake’s second open-heart surgery took over 9 hours; the doctor came to talk with us and explained that the attempt to widen the artery had failed because it would create other issues with his tricuspid valve and Jake couldn’t handle any more issues in his heart. They instead sealed off his pulmonary artery and placed a conduit to bypass the area that they could not widen. The good news was that this would fix the problems he was experiencing. The bad news was that Jake would outgrow this conduit and it would have to be replaced as he grew. Now Jake faces 2-3 more open-heart surgeries in his future as he grows.

It was devastating to think this process was never going to be over, that we have a life-long worry of when the next surgery will be, but at least we had a chance to see our baby boy alive and have a life with him. Altogether we spent almost three weeks in the PCICU while Jake recovered from his multiple surgeries and other complications like a partially collapsed lung, and pulmonary hypertension. From the moment we handed Jake off for surgery, it took two weeks for us to see him with his eyes opened again. We almost lost him several times and were not sure what the future was going to hold for us. It was a rollercoaster of emotions, scary thoughts, and harsh realities.

When we were able to bring Jake home, he came home on several drugs to help his heart and lungs heal, but also to help him wean off of the 14 medications that he had been pumped with for 3 weeks. Jake had bad withdrawals and was required to take methadone to help his pain during the withdrawal period. Within a matter of weeks, Jake was finally a normal baby again. His scar was healing, he was laughing, and he was FINALLY growing. Between his last surgery and his birthday in July, he had gained 19lbs and had grown 12 inches. His body was finally functioning properly, and he was making up for lost time. Five years and many echocardiograms later, and we find ourselves today chasing after the wildest boy you have ever met. You would never think that Jake has gone through what he did as a baby or know all that he faces in the future. He is so happy to be here, so happy to be with his family, and just loves life.

A year after his last surgery, Jake needed one small procedure where they had to balloon the conduit due to some narrowing, but that issue was fixed, and he has had promising checkups since. Although we know that one day, he will have to have another open-heart surgery, we do our best to not live in fear of that day. We enjoy the moment, we enjoy the day, and we enjoy each season of our lives and live one echocardiogram at a time. Although we as his parents struggle with anxiety and even touches of PTSD at times from watching our son die, Jake continues to give us the strength we need to see the hope in it all. He has had some issues with night terrors after surgery, and his speech was delayed, but through some early intervention and speech therapy, he moved through that phase and is now quite the chatterbox! He may have some delays due to the lack of oxygen he experienced for so long, but as of now, he is meeting all of his milestones and is the joy of everyone’s life.

Jake has been affectionately nicknamed, ‘Jake The Barbarian.’ He is a force to be reckoned with and he is all boy. He is a noise covered in dirt and we love every second of it. He is our son, our rainbow baby, and we are so thankful for every day that we get to be his parents.”