Shane’s Story

photo of Shane on the operating table with banks of monitors

Our son, Shane Shimatsu McCusker, was born on September 9, 2010 at 6:11 p.m. He was a beautiful 6 lbs. 15 oz. and 21 in. long. He was everything we had dreamed of and more. We were the happiest parents in the world!

As the nurses were cleaning him, however, they expressed concern for the kind of cry Shane was producing. The nurses said Shane was grunting and wanted him to produce a louder sound. To us, we didn’t think Shane’s cry was abnormal, he sounded like a newborn to us; we even took out a cell phone and held it up to our newborn son, so our parents, who were in the waiting room could hear the sound of their first grandchild. As minutes passed, the nurses said they needed to call in the respiratory team to see if they could help him.

The nurses and doctor assumed that Shane had some fluid still left in his lungs and he was having problems clearing it, no real cause for concern. When the respiratory team came in, they attended to Shane but still could not get him to produce the cry they wanted him to make. They told us they would need to take him to the Neonatal Intensive Care Unit (NICU) where they could monitor him better and see if they could help him further. Still, with no real cause for concern, they took our son and said he would most likely be back in our arms in an hour. (We weren’t allowed to be in the NICU with him due to a shift change).

The hour soon turned into hours. What was thought to be fluid in the lungs soon looked to be more serious. There was talk of a possible collapsed lung, but things seemed to be looking more complex. Approximately after two hours of being monitored in the NICU, one of the doctors came in and told us, along with our two families, that our son had stopped breathing. He was only without breath for 8-9 seconds, however, this abnormality caused concern that there was something seriously wrong. The NICU team had taken X-rays and found that Shane’s heart was different than the average person. The doctor explained it by telling us that instead of being placed on the left side of the chest and angled to the left, Shane’s heart was on the right side of the chest angled to the right. He said that there were further tests that needed to be done, but that the on-call pediatric cardiologist was coming in to see Shane. The doctor further expressed that Shane would probably need to have an immediate surgery. He said the NICU team was busy administering an IV through Shane’s bellybutton and that they had put him on a respirator. At this point, we were in deep shock from this entire situation. For the past nine months, there had been no concerns about the pregnancy or Shane himself. His heart was always very strong in ultra sounds and there had never been any talk of any kind of medical issue. Even during labor, Shane’s heart was strong and never sounded in distress, so the news of a heart condition blew our minds.

The pediatric cardiologist came into our room two hours later, after spending time assessing Shane in the NICU. He was a very reassuring doctor who sat down with all of us and went through Shane’s condition. He immediately assured us that Shane was in a stable condition and doing very well. He was, however, hooked up to respirators to help him receive the proper oxygen level. The cardiologist drew a diagram of Shane’s heart, showing us that Shane had a condition called dextrocardia with the possibility of heterotaxy syndrome. He explained that with dextrocardia and heterotaxy syndrome, Shane’s heart and inner body would look like a mirrored image of the average person. He explained that children can live with dextrocardia and heterotaxy syndrome as long as all the organs and veins function like the average person’s, just in the opposite direction. The main concern at this point was not the strength of Shane’s heart, as he said, Shane was strong and stable, but rather the fact that there wasn’t enough oxygen getting to his blood. Shane, on his own, was only receiving about 70% of the oxygen needed to saturate the blood stream and even with the help of the respirator, Shane was still having difficulty reaching the 100% saturation level. He said that Shane may need to be taken into surgery but that they could not determine that status at the hospital in which we delivered. Shane would need to be taken to the Mattel Children’s Hospital at UCLA Medical Center, where they had the proper equipment and specialists to treat Shane’s case. The doctor assured us that UCLA was the place to go for pediatric cardiology. He gave us the name of one of the doctors who would be receiving Shane and told us the transport needed to happen within the night. We were simply in shock. Panic hadn’t had time to set in, all we knew was that our son needed to get the best possible treatment available on this planet. We asked to see our son and the doctors allowed us to do this.

In the NICU, Shane was hooked up to many monitors that were making all sorts of different noises. He had a couple of nurses attending to him while he laid on his little bed with his eyes closed and resting. It was so hard to see Shane hooked up to all those monitors, yet, he looked quite comfortable with his arms resting up by his head. Shane had only been born four hours ago, yet his appearance looked like that of a baby born weeks ago. His head had rounded out, his cheeks were full and chubby and his coloring was perfect. He didn’t have that same newborn look he had when he was first born. He was the biggest, healthiest looking baby in the NICU, yet, he had the most complex case. Though the nurses were constantly having to monitor Shane and give him their undivided attention, they let us hold his hands and feet while we talked to him. He would move his arms and legs around as we held them, and he would periodically open his eyes and look at us. He was so precious, so handsome, and so perfectly healthy looking, we still could not quite comprehend that he was having problems. During this time in the NICU with Shane, they allowed us to bring our parents and siblings in one at a time so they could see the newest addition to the family. As each one of them came in, they said hello, held his hands and feet, took pictures of him with their cell phones and expressed their love to him. Shane was able to meet both sets of grandparents and his two uncles that night.

We left the NICU after spending an hour with Shane. The doctors and nursing staff said they would take good care of him and that we would be able to see him again before he was transported to UCLA. We were then sent to our recovery room where we joined the rest of our family.

At this time, we, being Shane’s parents let the shock settle in. Panic then started to rise within us and we felt so helpless. How did the best day of our life soon turn into the most helpless? We were supposed to have our son in our arms, with our family and friends dropping by to meet him, not nervously waiting for a transport team to take our son to another hospital where he could receive more intensive care. We told our families to go home as they would need to be back early in the morning to head out to UCLA. The nurses and doctors at the hospital said we wouldn’t be able to go with Shane that night and that the earliest we could be discharged from the hospital would be in the morning. We sat nervously in our room for the transport team to arrive, we tried to rest, but there was no way we could sleep under such circumstances.

At around 12:30 a.m., as we laid in our hospital beds, we heard the loud sound of a helicopter flying in. We looked at each other and knew that Shane’s ride had come. We were visited by one of the transporting doctors, where she went over paper work with us. She assured us that they would be taking good care of Shane and that they would call us the second they got to UCLA and had him stabilized in their hospital. After signing all the paperwork, we were taken back to the NICU where we got to spend more time with our son.

Shane had many people surrounding his little bed. The transporting team was busy transitioning monitors while the NICU nurses were busy monitoring him. Again, we were able to hold his hands and feet and talk to him. We told him how brave and strong he was and though we couldn’t go with him, we loved him very much. As we were spending time with him, Shane would put his fingers in his mouth and suck on them, even though he had a breathing tube in his mouth. When the nurses would poke at him trying to remove the IV, Shane would make angry faces of annoyance, but he never tried to cry. Our little guy was very tough and very strong and we were so proud of his strength. When the transporting team finally had their equipment ready for Shane, they laughed at his stubbornness when he tried to pull out his breathing tube and refused to have his legs strapped in for the ride. In these brief moments, Shane let us know what kind of boy he was, fearless, strong and stubborn. It was very difficult sending our newborn son on that helicopter without one of us being able to go with him. We so badly wanted to be there to hold his little hand to show him how much we loved him. As we laid in bed, we heard the helicopter take off. Sleep that night was difficult. At around 3:00 a.m. the UCLA medical staff called to tell us that Shane was stable and doing well.

At 8:00 a.m. the doctor came in and discharged us so we could be with our son. Along with our families, we quickly headed over to the UCLA Medical Center.

When we got to UCLA, we were directed to the NICU. A NICU nurse informed us that our son was currently having an MRI and that the doctors would be with us shortly. The first doctor to meet us was a pediatric cardiologist. He told us that Shane’s MRI confirmed dextrocardia and heterotaxy syndrome, but it was much more complex than just having a reversed system. The doctor informed us that Shane had more serious issues of the heart and lungs. The veins from the lungs that were supposed to go straight into the heart, were instead being redirect through other parts of Shane’s anatomy. The doctor also said that sometimes, with heterotaxy patients, they may be missing organs like a spleen and have a transverse liver, where instead of being located on the side of the body, it is located in the middle. Though, this was something they weren’t completely concerned with at the time, they did tell us that Shane did have a transverse liver and they believed he was without a spleen. We asked if they had seen cases like Shane’s before, he said yes, but it was very uncommon.

The doctor then began to tell us that the surgery was 100% necessary if our son was going to live. He said that along with this surgery, Shane would need to have at least two more surgeries to fix the problems he was suffering from. He told us that this was the most critical of the three surgeries and if Shane survived this one, the others should not be as difficult. At this point, the cardiologist was joined by the cardiothoracic surgeon, who would be the one operating on Shane. He also went through the findings from the MRI and the procedure of the surgery. The surgeon stated that he would be redirecting the veins into Shane’s heart and that a necessary shunt would need to be added to allow a greater blood flow from his heart to the lungs. He said that Shane would be put on aspirin to thin the blood to lower chances of blood clots that could be fatal. In order to do this procedure, the surgeon said they would lower Shane’s body temperature to 15 degrees Fahrenheit. He said that this was standard procedure for this type of surgery. The doctor then prepared us for what Shane would look like after surgery. He said Shane would appear to be very swollen due to the IVs and medication, and that his chest would be left open incase of internal bleeding or swelling of the organs. Shane would be under high doses of narcotics and painkillers for two days and would be resting comfortably until his chest could be sewn back together. When the doctors were done explaining, they allowed us to ask questions. We asked what the probability of our son chances of survival were, since he was so young and had to go through such a major surgery. The surgeon said the chances of Shane surviving surgery was around 85%. There was a 5% chance that he would survive surgery but have to be put on an ECMO (extracorporeal membrane oxygenation) machine which pumps the blood and oxygen throughout the body. He said if Shane were to need this device, the chance of survival was not high. If a person requires the use of the ECMO machine, the chances of them living off of the machine are slim because the machine is essentially doing the work of non-functioning organs. We could hardly believe this was happening, but we were willing to do anything to keep our baby with us. We asked the surgeon on a scale of difficulty, where was Shane’s procedure. He said it wasn’t the easiest but wasn’t the most difficult. We asked if we could see our son before surgery but they were not sure if that was going to be possible due to the need to get him quickly into the operating room. We asked them to take care of our son and to do everything to keep him alive.

Again, panic had no time to set in. We were too concerned with our son’s survival to panic. The surgeon asked our family to wait in a specific waiting room while Shane was in surgery so that they could find us after. Our families went to the waiting room before us, as we needed time to digest what the doctors had just told us. As we sat in the room where we had met the doctors, we got a call on the cell phone telling us that one of the NICU nurses was looking for us and that we needed to get downstairs right away; she was waiting to take us to Shane. We rushed downstairs and met the nurse who quickly ran us up to the OR. The nurse said that she had worked it out with the transporting nurses so that they would “run into” us on the way to the OR. She was so kind. When she referred to Shane, she called him “mine” and said that when they have patients they get attached to, they call them “theirs”. This gave us a real reason to smile because we knew how much she cared about our son.

When we got to Shane, he was so awake and alert, relaxing on his transporting bed. He, of course, had his respirator in his mouth, but to us it looked like a big pacifier. He was so calm. We rushed to his side and held his hands. We were able to look into his big eyes and tell him we loved him and how brave he was. Those special minutes with our son are the most cherished memories we have. We will never forget the way he looked at us, the fearlessness that he displayed, the innocence he possessed, and bond shared between the three of us. That was the last time we saw our son awake.

While we were nearing the OR, we met some of the doctors that would be monitoring Shane while he was in surgery. They were so kind, like everyone we had met, thus far, at UCLA, and when we pleaded to them to do everything they could to keep our son with us, they calmly assured us that that was their job and that they would do everything they could. Their demeanor and kindness gave us assurance that our son was very cared about.

The 3-4 hours that Shane was in surgery seemed like an eternity. During this time we kept thinking that this wasn’t really happening. We sat in the waiting room, tried to eat, but really had no appetite for food. We prayed that Shane would make it through the surgery without the assistance of the ECMO machine. The operating staff called two times during Shane’s surgery. Each time our hearts would drop while we tried to read the vocal expression of the person on the phone. Both times, the news was optimistic and Shane was doing well.

At around 5 p.m. the surgeon came down and spoke to us. He said the procedure went well and that Shane was stable. He gave us the great news that Shane made it through surgery and did not need the assistance of the ECMO machine. We were relieved to an extent, but Shane still had a long road ahead of him. The surgeon informed us that Shane was being taken to the Pediatric Intensive Care Unit (PICU) and would remain there for at least two days under extensive monitoring. We were taken up to the PICU but had to wait to see him.

At approximately 8:30 p.m., we were allowed to see him; we were allowed to touch him and kiss him and hold his hands and feet. The sight of Shane’s PICU room was incredible. There were massive amounts of machines hooked up and surrounding our little boy. Noises were going off every couple of seconds and his nurse was attentively monitoring each machine. Under those massive machines laid our son. He was motionless and asleep with a clear plastic sheet covering his open chest. He was swollen all over. His shoulders touched his face and his little arms were puffy. The critical care doctors met us in Shane’s room and introduced themselves to us. They told us that Shane was in a comfortable state with the medication, so he didn’t feel any pain. We spoke with them about Shane’s condition. They told us Shane was stable, however, they were concerned about his blood pressure. A few minutes prior to us entering Shane’s room, his blood pressure was very high, but they were able to get it down and stabilized. As soon as we started talking to him, however, it rose back up. We look at this moment as Shane telling us how excited he was to see us and to show us how hard he was fighting.

The doctors advised us of what the future plans of Shane’s stay at UCLA would look like. They said that the next 48 hours of Shane’s recovery were the most vital and critical, but once he pulled through those hours, he would begin to be fed like a normal baby. They also said that if Shane continued to progress, he might be able to go home within ten days. We asked about how normal Shane’s life would be once he was able to go home. The doctors said that he would be placed on different medications. He would need antibiotics to prevent illnesses. As he got older, he wouldn’t be able to play certain sports due to fatigue of the heart, but they were optimistic of him living a fairly normal life, though there are always higher risks due to his heart condition. The doctors then told us that we could stay in the PICU with Shane that night, but advised us to go home and rest. Since Shane’s birth, we hadn’t had much sleep and any chance of sleeping in the PICU would be nearly impossible, with the lights and sounds of the machines, not to mention the increased stress monitoring our son every second. They told us that the night would be like a roller coaster, as they were preparing for an up and down night with Shane, but they felt we needed to take care of ourselves by getting some rest, so we could be there for our son when he needed us. Our family was able to come in to visit him one at a time before leaving for home. Since the doctors were optimistic about Shane’s current condition we kissed him and told him we loved him many times before leaving. The doctors took our numbers and said they would call if anything should change that night.

We left feeling optimistic about Shane’s condition. He was doing everything he needed to do and was responding in the most positive way. When we got home, we prayed that his blood pressure would remain at the level it needed to be and we were able to fall asleep faster than was expected.

At 2:30 a.m. the phone rang. Instantly, at that moment, our hearts dropped as we knew a call in the middle of the night was not good. The PICU doctor was on the other end telling us that there had been a change in Shane’s blood pressure and that they did not think we needed to come right then, but that they would call us if there were any significant changes. At around 3 a.m. we called the PICU back and the nurse on the other end said we should probably come. We immediately called our parents and all headed to UCLA.

When we arrived at the hospital we ran to the PICU and were immediately approached by a nurse. The curtains to Shane’s room were closed and the nurse directed us out of the PICU as she went to get the doctors. The doctors escorted us to a private room. As they sat us down, they told us that Shane’s blood pressure had dropped and though they tried to revive him for 20 minutes, Shane couldn’t hold on and he had passed away. This was the most devastating news we had ever heard.

Minutes after the news, that broke and shattered our hearts, we held our son and knew he fought such a heroic battle for his life. He was barely 33 hours old and had endured more challenges than many of us have in our many years of life. We held him close, the way we had dreamed of for the past 9 months. We didn’t want this moment to end. We couldn’t imagine letting go of him. He looked so peacefully asleep. We cried and kissed him, stroked his hair and stared at our beautiful baby. He had that wonderful newborn baby smell, one that we will never forget. We couldn’t imagine going home without our son, our precious baby boy who we dreamed about for so long. We couldn’t imagine going on with our lives without him. Leaving him in the arms of his nurse, knowing that was the last time we would see him, hold him, or kiss him, was the toughest experience of our entire life.

Later that day, at home, surrounded by our family and friends, we just couldn’t believe what had occurred within the last 48 hours. When we left our home for the hospital to deliver Shane, we were so excited to return home as a family of 3. When Shane was born, he gave us the most indescribable feeling of happiness we had ever felt. Our happiness soon turned into helplessness, helplessness to panic, panic to scared, scared to the worst feeling of sadness one could ever endure. The question of why entered our minds. The visions we were so looking forward to, were crushed and destroyed. Life was not supposed to be this way. Our family and friends should be gathering to meet Shane, not console us.

Every type of emotion was experienced that day. But as we sat there amongst our family and friends, we reflected on what Shane had gone through. Yes, we were sad that Shane was not with us, we were sad that our son’s life was so short, and we were sad that our dreams were crushed. But through our pain, we hadn’t recognize or thought about, what would Shane have wanted?

Shane showed us who he was. He was a fighter, he proved that to us. He was fearless and brave. He remained strong throughout his struggle for life. Shane’s life would have been different from others. He would not have been able to play certain sports or have the endurance to keep up at times doing the things that all little boys love to do. It was already known that he would need at least two more surgeries, if not more. He would have had to take medications his entire life to prevent the average cold from killing him. We sat there and talked about this, and realized that Shane’s resilience and strength was too strong for what this life had to offer him. He didn’t want to hear “no” when we had to tell him he couldn’t play soccer or football. He didn’t want to live a monitored life. He was far too strong and brave for this life on earth and he deserved so much more.

Though we would have done anything and everything to keep our son with us, we know this life wasn’t good enough for our dear son. And through the anger, sadness, and many tears, we have found strength through the examples set by him. His strength and fearlessness is what keeps us going everyday. Though nothing can take away the pain, of losing a child, when we reflect on Shane’s life, we are so grateful to have had such an amazing son who truly changed our lives. This is why we chose to start this foundation in his honor. Our son put up a fight during his short little life. He wanted us to know who he was and how to fight through struggles. He taught us that life is too precious to worry about the small stuff and that with each day we have to truly make the best of it, fear cannot control our lives, we have to be strong.

Shane was this remarkable little baby who gave us so much more than just happiness. We are so proud of our son and so honored to be his parents. Though the pain of losing him is still so strong and so fresh in our hearts, Shane’s memory and life lessons should not leave this world, even though physically he is gone. This foundation means the world to us. Before Shane’s birth, we had no idea what it meant to have a congenital heart defect. We had no idea that our son would have ever been diagnosed with such a disease, but because of our son, we want the world to know more about it. Congenital heart disease is the number one cause of infant fatality with so many of these defects going undiagnosed while in utero. There is so much more research that needs to be done to find the true causes of these defects of the heart. Hopefully, one day, children like Shane will be able to beat the odds and live normal and healthy lives. The doctors and nurses that work in pediatrics are special men and women who dedicate their lives to saving babies like Shane. Shane was cared for by some of the best doctors and nurses in their field of study. The medical staff at UCLA was amazing; their compassion for their patients and families was something we were truly blown away with. Even though Shane is not with us today, we are truly grateful for the doctors and nurses who cared for our son. We know they all gave him the best chance at life. This foundation will raise money to support awareness of congenital heart diseases and to help pediatric cardiology at the UCLA medical center.

We will always love our Shane and be grateful for the things he taught us. He has touched our lives in a way no other person could. He was so young, yet so wonderful; Shane did not leave this earth without leaving his mark. We owe it to him to make this world a better place. We love you Shane, always and forever! The Shane McCusker Foundation was established to honor the life of our son Shane, who was diagnosed with a rare congenital heart disease just hours after being born.  With no concerns given to us throughout the entire pregnancy, we expected to take home a healthy and thriving baby boy, however, that never occurred.

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