Eddie’s Story
Eddie's battle with CHD and chronic lung disease, shared by his mom Jen.
What should have been one of the happiest moments in our lives, all started to crash down. The doctor came into the room and told us there was something wrong with our baby’s heart. We were first time parents and had no idea what that meant. We were halfway through my first pregnancy and our world is being turned upside down. From that moment on, we needed to soak up all of the information and find the best doctors that we could to ensure the best possible outcome for our little BOY.
Edward James (Eddie) Mayerik was born on April 6, 2015 at 11:54pm. He was whisked into this world, I got to hold him for about 30 seconds before they took him to the Neonatal Intensive Care Unit (NICU). At this point we knew there was an issue with Eddie’s heart but we didn’t know what exactly. Precautionary measures were taken to ensure Eddie was safe so the doctors could run the appropriate tests that they needed. The next morning the cardiologist came to talk to us and in order for them to get the appropriate pictures of Eddie’s heart he had his first procedure, a cardiac catheterization, at 18 hours old.
It was then that we found out that Eddie had a few different conditions, the big one being Major Aortopulmonary Collateral Arteries (MAPCAs) which are congenital blood vessels that connect the aorta to the pulmonary arteries, allowing blood to flow to the lungs. They are usually associated with other congenital heart defects that have reduced pulmonary blood flow. He also had Pulmonary Atresia and Ventricular Septal Defect.
So many things and so overwhelming. But at this point, the good news was we weren’t going to need to have open heart surgery right away. Eddie could grow and get bigger and they planned to have his first surgery around 10-12 weeks old.
We were able to bring Eddie home where we probably had the most normal part of his life. No oxygen. No feeding tubes. Just mom, dad and Eddie. Around 8 weeks old, Eddie’s oxygen levels started to drop. We took him to the doctor and they immediately admitted him to the Pediatric Cardiac ICU. He underwent numerous tests to ensure that there was nothing else causing these oxygen levels to drop. And on June 15, 2015, Eddie had his first open heart surgery lasting 8 hours. He was intubated and chest open until they were able to close his chest bedside.
From the time of his first surgery Eddie had lung issues. We called it “the junkies” but it is formally called atelectasis on his lungs which would cause his lungs to collapse. His first hospital stay was for 50 days. We were able to bring him home on July 18, 2015 on oxygen and with an NG tube down his nose, but we were able to go home! We were told to do everything we could to keep him from getting sick. And boy did we try so hard. I had masks and gloves in the diaper bag, hand sanitizer galore, and always a light blanket to keep over his car seat if anyone got too close.
His first winter he had a few cardiac caths just to continue checking his heart and all was looking okay. He was then scheduled for his next open heart surgery on February 15, 2016.
We had an idea of how things would go and we were ready for surgery. We were scared but we were ready. And this was one of the hardest surgeries. Surgery started fine but then we were told he wasn’t doing great and they had to put him on the Heart/Lung Machine (ECMO) to keep him alive. His heart had been on bypass for too long and it needed time to rest before they allowed his heart and lungs to work on their own. Eddie came out of this surgery on EMCO and his chest was open.
He started to develop some bleeding and the doctors didn’t know where it was coming from, so on February 18, 2016, they took him to the hybrid OR to explore. It was very risky to go back to the OR only three days later, but there was no other choice. We were told as they took him away that the prognosis wasn’t great and this was their last resort. We cried, we prayed, and we waited, and waited, and waited.
The first few hours our reports were going pretty well from the OR nurse, but then it was longer and longer without an update. We were then told that there was an emergency in the OR and a vessel of Eddie’s had ripped and the surgeon was holding his finger in Eddie’s heart to keep him from bleeding out, while an additional surgeon was on his way. These two amazing men saved Eddie’s life.
He still came out on ECMO for his heart and lungs to rest again. On February 29, Eddie’s ECMO circuit started to clot so they needed to try and take him off ECMO and just back onto a breathing machine. We have still had nurses tell us it was the fastest they have ever seen anyone come off of ECMO, but that was our Eddie – he was the CHAMP. He was intubated for 24 days and hospitalized for 50 before we were able to go home, the day before his first birthday!
Eddie continued to be monitored closely. We had to watch his weight gain and feeding. After Eddie turned one, he started moving a little more and was bigger. We started having issues with him pulling out his NG tube and it would stress him out when I had to put it back in, so we decided to have a G-tube put into his stomach to help with the feedings and then we could start working on food by mouth, which was a whole additional part of his life.
We continued to keep Eddie in his own bubble to keep him safe and healthy. We also started Eddie in Early Intervention Therapies. Having been in the hospital for so many days in his short life thus far, Eddie was delayed in his development. He was able to work with Developmental, Physical, Occupational, and Speech Therapists to try and catch himself up as much as possible. We had some amazing therapists over the course of two years.
Before his second birthday, Eddie had his 4th open heart surgery on December 12, 2016. Cardiac Surgery went very well – better than expected even. Eddie was not extubated right away because he was having irregular heart rate and he continued to go into SVT. He was intubated for 17 days. There was difficulty with his lungs. They couldn’t get the lungs to clear. On December 19, Eddie was taken to the OR for a bronchoscope to clear his lungs. The procedure went well and they retrieved a lot of mucus to help clear his airway.
Around New Year’s Day, Eddie developed an infection in his chest (Staphylococcus). He ended up having a wound vac on his chest because the infection had started to split open his incision, and eventually ate away at the sutures holding his breast bone together. On January 7, 2017, Eddie was taken back to the OR for a wound debridement (flushing out the infection) and they bound his breast bone (sternum) with steel wire (can be seen on the x-ray). Overall, even though this was another long stay, it was the best one so far in terms of outcomes. He was hospitalized for 42 days.
Over the course of the next year, Eddie was hospitalized five times for different infections/illnesses. When a heart kiddo gets sick they are more likely to end up in the hospital for that sickness.
On August 6, 2018 at age 3, Eddie had his 5th open heart surgery – his best one. Eddie went in to have his jump graft (on the right side) redone because it has clotted off. The surgeons opened up the Pulmonary arteries and replaced the jump graft. Eddie was extubated that SAME day. He received an artificial graft, so he was put on lovenox shots 2x daily to attempt to keep the jump graft open. We gave him lovenox shots for a very long time. It was so terrible. He hated it, since we had to do it 2x per day.
He was so bruised from all the shots and then we had to go in weekly to get blood draws to make sure his levels were within the correct range. Finally they changed him to an oral medication that could go through his G-tube, but we still had to go for weekly blood draws. This was a very troublesome thing for Eddie that caused him much anxiety.
Eddie’s 6th open heart procedure on August 5, 2019 was a successful, 11-hour surgery. They reconstructed both the right and left side Pulmonary Arteries putting in tubing to connect the left side to the right side to allow much better blood flow. He also had his pulmonary valve replaced. Eddie was extubated within two days, but due to lung issues and being fluid overloaded, he was reintubated.
For the next few days, Eddie was having irregular heart rhythms called JET rhythms. They had to use pacing wires numerous times to keep Eddie’s rhythms normal. Eddie struggled with his lungs and they continued to try and clear his lungs of the mucus. He was extubated on August 13 after more than a week post-surgery, but was still weak and had lots of secretions.
After numerous attempts of trying to wean the different supports (non-invasive vent, nebulizers) it was determined that Eddie should have a bronchoscope to clear secretions, as well as a thoracotomy (pliation) to pin his diaphragm down. This procedure helped Eddie and he was discharged on September 20. But after discharge we had trouble maintaining Eddie’s saturations. We ended up maxing out all of our supports at home.
Two days later, we were back in the ER.
They put him on highflow oxygen. Upon further investigation with x-ray, it was found that Eddie’s intestine was filled with stool and that he was aspirating when vomiting. After a week, he had a vocal chord scope (9/30) and then was taken to the OR again for a vocal cord injection. They continued to work on getting the poop out of the intestine with a hefty “waste management” regimen.
Since his intestines were clearing, he was acting more hungry and saying he was more hungry. He has been licking everything in sight and wanted meal trays at every meal. His vomiting has also just about disappeared. He was discharged on October 12.
One of the scariest things about having a medically fragile child is when those around you are sick. So imagine my own anxiety once COVID hit in 2020. This was the scariest thing that I think I may have ever encountered. How do we keep Eddie safe?
Thankfully, we were able to keep Eddie safe and healthy throughout the lockdown of COVID. Eddie did have a cardiac cath in June of 2020 which showed he was doing okay. We remained homebound and saw no one.
Eddie did school virtually and we were all doing okay. We zoomed with the doctors in November of 2020 and they decided it would be best to have surgery in the spring. In March 2021, we took Eddie in for his pre-op appointments, blood work, echo, x-rays etc.
While we were in the office after just having seen the Nurse Practitioner, I got a call from a number from the hospital. It was one of the surgeons calling to tell me that they canceled Eddie’s surgery because they didn’t think they could do anything more for Eddie here and they were referring us to Lucille Packard Hospital at Stanford in Palo Alto, California to the doctors and surgeons that specialize in Eddie’s condition – MAPCA’s.
To say our world was turned upside down again is an understatement. First, we had to wait for someone from Stanford to call us; then, we had to figure out and manage how we would travel all the way to California only to not know if they would actually do the surgery. Not only that, we had to fly on a plane for over four hours with a medically fragile child during the pandemic. I didn’t know if we could do it. But like always, we set the wheels in motion.
We set a date for his cardiac cath and other tests in California, and we were able to finally get approved for travel oxygen. We found an organization that sponsors flights for medically fragile children and their families when they have to go out of state for procedures. And we finally made it to California.
Eddie had all of his tests and his cardiac catheterization. When the doctor came out to talk to us after this cardiac cath, he told us that Eddie was a candidate for open heart surgery to do a full reconstruction of his MAPCA’s and they would call us to schedule. So we flew home, elated that Eddie was indeed a candidate for reconstruction.
We continued to enjoy the summer with Eddie and his siblings, close to home since COVID was still all around us. We had a big send off for Eddie with a parade and Catboy from PJ Masks and then in late August 2021, we flew out to California again to have Eddie’s 7th (and last) open heart surgery.
I knew this surgery was going to be long, but I didn’t realize how long. We got out to California and had more pre-op tests run. A Physician’s Assistants told us that the surgery would probably be close to 18 hours. Whoa. This would be the longest surgery to date for Eddie.
We got a call that they had to push the surgery back due to staffing issues, but Eddie had his surgery on Friday, September 3, 2021. This surgery ended up being 27 hours. Eddie had so much anxiety going into this surgery. As he got older and more aware, he knew what was going on and he knew that not every kid was having open heart surgeries.
Before surgery, they were not able to give him enough medicine to ease his anxiety, but thankfully Stanford has this amazing ‘Parents to the OR’ program where I was able to put a full gown on and walk all the way back to the OR with Eddie until they had him asleep with sedation meds. It was truly an amazing experience to bring him back to the OR.
And then Nick and I waited, and waited, and waited.
They had taken Eddie back to the OR around 9am. They would update us about every two hours; we always got a “He’s doing great” remark and not much else. I always figured, no news was good news. At the 5pm phone call, they told us that they were about ready to get him on bypass—they hadn’t even started the major part of the surgery yet. They told us they were still mapping out how they would organize all of the MAPCA’s to fully reconstruct his Pulmonary Arteries. That’s why the surgery took 27 hours.
The next morning we were taken up to the Pediatric Cardiac ICU area and we waited some more. We talked to the surgeons and they were pleased with how the surgery had gone. Now, it was time for recovery. This was no walk in the park.
As with almost every other surgery, Eddie had multiple (non heart related) complications. He had lung issues, they thought he had internal bleeding, he had gallstones, and he got an infection from an infiltrated IV. He ended up back in the OR three additional times for these various complications. But ultimately by the amazing care of the doctors, nurses, and all of the different therapists, we were discharged about eight weeks after arriving in California and flew home in early October.
Eddie was fragile but we were home. We kept him close and away from everyone for a long time. He was still homebound from school, but he was getting to participate in some classes virtually and seeing his therapists virtually.
Eddie was finally able to return to in person school in February of 2022. He loved school. He had finished Kindergarten the prior year loving school and ready to start 1st grade with all day school!
We headed back for a one-year follow up at the end of July 2022. A simple cardiac cath turned into some lung complications, again, where Eddie was intubated for a week due to an infection. He was able to recover and we flew home, but after that procedure Eddie’s lungs never really recovered.
He was sick a lot during the fall of 2022 with multiple rounds of pneumonia and, with his brother and sister now in school, we were constantly passing illnesses back and forth. The holidays, thankfully, were pretty healthy for Eddie in 2022. Little did we know it would be our last Christmas with him.
We started 2023 happy and healthy and back to school we all went. In February, cold and flu hit our home again and Eddie just couldn’t kick whatever was going on with him. We took him to the doctor on March 2, 2023 and he was being treated for yet another round of pneumonia. He started feeling better but after his last day of taking antibiotics, he started having fevers again. He got stronger antibiotics, but it was only three days later we had maxed out his oxygen and medications at home (the first time since pre-COVID) and we were headed back to the ER. In the ER they were able to put him on high flow oxygen and get his oxygen levels back to a decent spot. But because he was on high flow oxygen, he was admitted to the Pediatric ICU while more tests were run.
Eddie was diagnosed with metapneumovirus and it couldn’t be treated with antibiotics. We just had to wait it out.
Unfortunately, with a kiddo like Eddie who has lung issues, waiting is not always a good thing. Each day when I got back from work, I learned they had increased his oxygen levels. At one point he was on 40 Liters of oxygen. That is like having your head hang out the car window while going 60 MPH in your car. It was the day before spring break and I decided to take the day off. I was exhausted from sleeping in the chair at the hospital and commuting almost an hour each way, and Eddie just wasn’t looking good. As I woke up that Friday morning, they had held his morning feeding and I knew that that meant that they were thinking about putting a breathing tube in. We were so scared.
They ended up putting the breathing tube in and all seemed to be okay, but then it wasn’t. Eddie’s heart started to go into irregular rhythms again and it was not safe for him. They needed to have him rest. It was a long 12-24 hours after that.
Each time the doctors told us to go back to the Ronald McDonald House to rest, we would get a call saying that something happened and we had to run back over to the hospital. Finally right before midnight on March 25, 2023, they told us that they were going to be putting Eddie on ECMO and he was being transferred to the Pediatric Cardiac ICU.
Our little fighter held his own. He was on ECMO for 12 days and on his 8th birthday on April 6, he came off of ECMO. It was amazing. He stayed intubated an additional six days and was extubated on Easter 2023.
Things started to slowly get better.
Eddie was slowly getting stronger and they had even talked about moving him to a different facility for therapy. I decided to take a leave from work to spend time with Eddie and make sure I was there to advocate for him every minute of the day. With the way Eddie’s anxiety was, one of us needed to be with him around all of the new potential doctors and nurses.
But right after we had this discussion with the doctors, things started to go downhill again for Eddie. He started having trouble breathing and couldn’t keep his oxygen levels up.
They started him on a Bipap machine which was very hard for him; since he was young he hated having a mask put on him for anesthesia or anything, so to have this mask on while he was sleeping was tough with his anxiety. But as always, like the CHAMP that he was, he did it and started getting used to it.
We were still just at a plateau. In the end of May, they took him to the OR again for another bronchoscope to try to clean out his lungs. They got a decent amount but it didn’t help his overall oxygen levels like we thought that it should. It was then brought up to us about possibly doing a tracheostomy, again turning our world upside down.
About this time it was also brought to our attention that Eddie’s team was sending all of Eddie’s records to Missouri to see if Eddie was a candidate for a heart/lung transplant. They wanted to see if this could be an option instead of the trach. So we were in another limbo of waiting to hear back from Missouri.
June seemed to be a decent month. We were just kind of hanging out in the hospital, going through our routine of daily activities, tutoring, therapies, meals, etc. And then Eddie noticed that his hand was shaking a little bit and he dropped something that he should have been able to hold. We mentioned it to the nurse and kept an eye out.
Eddie was getting more and more tired. He was napping more throughout the day, but he would always give his best effort for school and for therapies. Then things really started to go downhill on July 1st.
Nick was at the hospital with Eddie over the weekend (our routine) and I was home with the twins. Whenever I was at home, I would communicate with the nurses and doctors over the phone just so I was always in the loop. And on the evening of July 2nd after talking to the Nurse Practitioner, I didn’t have a great feeling.
They were holding his feeds again and were thinking of intubating because his CO levels had started to climb. When I called early the morning of July 3rd before the twins were awake, they told me I should come back to the hospital, so I went back. Eddie’s CO levels were off the charts and he could barely sit up. But when I walked into the room, he sat up, reached his hands for me and said, “Mommy, I love you and daddy and Kelly and Kevin and Mimi and Pop and Grandma”. I said, “I love you too buddy. Lay back down and rest.”
And those ended up being the last words that he spoke to me.
They intubated him and had the ECMO team on standby. He got through the intubation and was doing okay, but his evening didn’t go well. On the 4th of July they had to put a paralytic on so he wouldn’t “fight the vent” and they tried to get his body in rhythm with the ventilator.
He was finally able to just rest for about 24 hours, but then on July 5th they noticed that his catheter had stopped putting out pee. This was an indicator that his organs may be starting to shut down.
They told us to call our family and have them come to the hospital. We did and everyone came. That night, the doctors told us that if they put Eddie on ECMO again that he would most likely never come off of it. Nick and I made the very difficult decision to sign a DNR so that our baby didn’t have to suffer any more.
He made it through the night, but at 4am on July 6th his body started to shut down again. Everyone came back to the hospital to say their final goodbyes. After the family had left and it was just Eddie, Nick and I, we turned off the machines and let Eddie peacefully leave this earth and go to heaven.
We were and still are absolutely devastated that the boy that made us parents is no longer with us. But Eddie was a true light in the world and that is why we have started this foundation – to continue to shine his bright LIGHT throughout the world.
We miss you Eddie, but you will never be forgotten!