‘If this ruptures, it will kill your wife and baby.’ My wife looked at me. ‘Save the baby.’ Our excitement turned to dread.’: Mom births baby with Complex Congenital Heart Disease, dad in awe of son’s ‘strength, resilience’

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“December 19, 2018 started out as a special day for my family because we were celebrating my dad turning 60 years old. This was a big milestone for us because he’s been cancer-free for over 30 years. I went over to visit him and my mom, and I brought my 16-month-old daughter, Clara, over to have birthday cake. I also brought a piece of cake home for my wife, Pam, who was just finishing up work.

As soon as Clara and I got home, Pam also arrived a few minutes later. I was putting Clara in her high chair and Pam quickly came in the house, rushed by Clara and I, and hurried upstairs in obvious pain. I was very concerned and I could immediately sense the confusion on Clara’s face, so I picked up one of her favorite books to show her, as I went to check on Pam. I wasn’t even to the third step on the staircase when I heard Pam scream, ‘Brian, I have to go to the hospital, come quick!’ I hurried upstairs to find her crouched down on the bathroom floor, groaning in pain. I quickly helped her downstairs, put both her and Clara in the car, and we went to the ER.

Courtesy of Brian Boyle

It was around 9:30PM that night, and I remember holding Clara in my left arm, and helping Pam walk into the ER, wincing in pain every few steps. The night air was cool, stars were very visible in the sky, and I just kept thinking to myself what could be causing my wife to be in such pain.

After two hours of being in the waiting room, the medical team finished up their testing and evaluations. I went back to check on Pam and noticed her room was dark, but she was still awake. She was wearing a hospital gown and sitting in the bed with an IV in her arm helping to provide some relief from the pain she was in. Even with all the pain, she still had a subtle smile on her face, and told me that she had some good news to share with me. She was pregnant. I felt a surge of happiness when she told me the exciting news, we were expecting our second child.

After such an adrenaline packed few hours full of anxiety and concern, this was such an uplifting moment. It almost felt surreal. Going back a few years prior, we had some trouble getting pregnant with Clara, even to the point of getting tests done at various fertility centers after three years of trying unsuccessfully. We were so happy when we found out we were pregnant with Clara and to now find out we were expecting our second child was truly a gift! But all the excitement was replaced with a sudden feeling of dread. My heart sank at the thought of being in the hospital room with Pam – what was causing the severe pain she was experiencing and could it affect the pregnancy?

Courtesy of Brian Boyle

After a few more scans, they discovered that Pam had appendicitis. The way the pain was shifting to that particular area of her abdomen was a clear indicator. This is when things began to escalate quickly because having surgery at only five weeks pregnant was very high risk.

When we met with the surgeon the second night at the hospital, both him and his team walked into our room in the ER. The surgeon very carefully explained the options we had, that they could try and see if a strong dose of antibiotics could help reduce the pain of the inflamed appendix. Or, if that didn’t work, then she would require surgery to remove the appendix, which he explained, had a high percentage of a miscarriage. I remember just looking at Pam’s face when the surgeon explained the magnitude of this situation, watching the devastation surface in her eyes and tears begin to stream down. I felt like I was drowning in that moment. They further explained that without surgery, the appendix could rupture, killing both Pam and the baby. Time began to slow down to a blur, hours went by within a second. We decided to try to see if the strong antibiotics could work, Pam even asking if it came down to a decision, that the baby’s life be placed in more importance over hers.

Later that evening, the vitals on the machine reported that surgery was the only option. We had to make the critical decision to move forward with the surgery to save Pam’s life. A few hours later, she was in the OR, getting the appendix removed, which was perfect timing because it had just ruptured. After a few hours of quiet discussion with our relatives in the waiting room, I was called back to see her. Even under all the stress and exhaustion, she looked beautiful as always. I held her hand as she laid in the hospital bed, her body coming off the heavy sedation.

Relatives began coming in a few at a time to see how she was doing, and there was more tests and scans that had to be done. Due to her labored breathing, they were worried about blood clots in the lungs so they had to give her a chest x-ray. More sedatives were given, followed by more scans, ultrasounds, painkillers, and more worry and concern. The medical team explained the grim news that Pam should now start to be aware of certain signs that she might be experiencing a miscarriage. We were able to go home two days later, and tried our best to stay positive, hoping and praying these symptoms wouldn’t show up.

We did our best to celebrate Christmas, but felt numb to reality, the worry and concern running endlessly though our conscious and even subconscious thoughts. Watching Clara open up her presents was a happy moment, her joy made us smile, but we were crying on the inside, not knowing if Clara would have a little brother or sister alongside her the following year. Our hearts were so heavy. After counting down the weeks, days, even minutes until Pam’s next OB/GYN appointment to see if there was still a heartbeat, we were able to obtain peace of mind when the Doctor was able to pinpoint a faint heartbeat – it was like being given the breath of life after all the worry and concern we experienced over the previous weeks. There was a heartbeat, this baby was already a miracle in our eyes.

A month went by and the heartbeat was there, and the ultrasound showed the baby developing on track. At the 20-week ultrasound, we were so happy that his day arrived we thought it would be special for Clara to experience the moment with us – would she be having a brother or sister? We couldn’t wait to find out.

Courtesy of Brian Boyle

In the first half of the appointment, everything was going well, the anatomy was measuring normally, internal organs were looking good, and we found out we were going to have a little boy. Pam and I were both so happy, we had already picked out a few potential names. The tech who was doing the scan and recording the results spent a few minutes measuring the heart, and I noticed she wasn’t talking as much at this point. She had Pam move in a few different positions to try and get better views of the heart also, but I tried not to get to worried about it because he was moving around quite a bit for the other measurements too.

The tech finished up abruptly and said she would be right back with the Doctor to go over the results. When she left, Pam and I both even mentioned to each other whether something must wrong with the heart. I tried to be positive, thinking the heart is beating so that should be a good sign, and the organs and anatomy are measuring normally for being 20 weeks. I began talking about Clara having a little brother and thinking about what it would be like to have a son and the adventures we would plan for, the activities we could do together as he grew a little older, and the man he would one day become.

Five minutes went by and the tech returned to the room along with the Doctor and another member of the team. I was holding Clara in my arms, feeding her a small pack of gummy bears to keep her occupied in the room. The Doctor flicked on the lights, and in a concerned voice said to us, ‘We are very concerned about your son’s heart.’ My ears began to burn from the sound of those words, and it was as if the beating of my own heart is all I could hear. Clara remained in my arms as I stood there, looking at the Doctor, then looking over at Pam’s face, reflecting back to the moment we were in the ER and the surgeon discussing the high risk of a miscarriage.

The Doctor began checking the heart on the ultrasound as well, recording results with the member of her team who specialized in cardiology. After a few minutes, they explained that our son had a series of life-threatening heart defects, which included pulmonary stenosis (narrow pulmonary artery), that the right ventricle didn’t form properly, that there wasn’t a tricuspid valve, there were holes in the heart, circulation wasn’t going where it needed to, various arteries were connected in different areas, parts of the heart were reversed entirely, high possibly of having to be placed on ECMO when he was born, and also the biggest, if his heart would even allow him to make it to full term. We never felt so scared in our lives. We left the medical center that afternoon and just broke down in tears in the parking lot, sobbing to the point where we couldn’t even find the words to speak.

Over the next few weeks, we began going to dozens of appointments that involved teams that focused on the heart, brain, cardiac surgery, genetics, and overall fetal development. From these appointments, there was no clear indicator as to what could have caused such complex heart defects to take place. Neither of us have any family history of these types of complex cardiac abnormalities. I was born with a bicuspid aortic valve and a heart murmur, could that have been a factor? Or could this have been a result of the appendectomy that Pam underwent? Every medical team gave the same response, they’re not quite sure what exactly caused this, it may just be something that happened with the genetic makeup during early development.

The more appointments we went to, the more things started to come out of left field. As soon as we started to wrap our minds around the severe issues with the heart, there were more concerns with the brain, or potential chromosome abnormalities, and several medical teams said that they strongly believed there was a genetic syndrome that was the cause of these cardiac defects. However, the more genetic testing we did, the more perplexing things became because the results were continuously showing up negative.

It wasn’t until two months before the due date when things begin to really take a turn that we were not expecting. Up until this point, we were so focused on the heart, but the routine ultrasounds began to show a growing problem with the development of the femurs and the head circumference. One month out from the due date, the results showed his head size was in the 99th percentile and his femurs were between 3-6%. Normal range they explained is right around 50%.

After the final day of extensive testing, the genetic team sat us both down and explained what we would be facing when our son was born: the circulation problems, cardiac procedures and the impact on his cognitive levels, severe neurodevelopmental delays, feeding tubes, risk of strokes, full time care and assistance 24/7, liver and kidney issues, and cardiac arrest. Earlier in Pam’s nursing career, she took care of patients just like this at the hospital. Their question to us was if we could handle a child like this, and our answer was, yes.

One month later and I was in the OR with Pam, sitting beside her during her scheduled c-section, and whispering to her that everything was going to be okay. When we woke up that morning, we were not sure what the day would involve, what types of challenges our son would face when he was brought into this world, but we knew he had an amazing medical team that was ready, and he had two parents that loved him with all their hearts. A little after 10AM that day, we heard our little boy’s cry for the first time. I looked behind the blue surgical screen where his team was quickly tending to him, and I saw his face for the first time. I looked at Pam, and kept telling her that he was beautiful, and for the first time in 9 months, we both cried tears of joy.

Courtesy of Brian Boyle

Liam was quickly assessed by the NICU team, and transported to his pediatric cardiac team that was at a nearby children’s hospital. I went with him and his medical team as we rode in the ambulance, listening to his strong cry along the way. As soon as we arrived at his hospital, his team was already waiting for him and began going through the process that was explained to Pam and I many times already, although it felt like everything was moving in slow motion that day.

After a few days of observation, they were able to do a full work-up on Liam’s unique heart anatomy. His cardiac defects include tricuspid atresia (no valve/connection formed between the right sided chambers, the atria and ventricle), ventricular septal defect (big hole in the two ventricles/lower chambers of his heart), double outlet right ventricle (great vessels coming out of the right side lower chamber), hypoplastic right ventricle (right lower chamber not formed well/not pumping well), transposition of the great arteries (aorta and pulmonary artery switched positions) and pulmonary stenosis (pulmonary artery going to lungs is narrow and has a very small opening). His superior vena cava (great vessel that drains his head and neck) is draining into the left side of his heart and not the right area where it should be. His oxygen levels will always be lower than normal, so he gets dusky in color when he gets upset or cries. He is also having heart arrhythmias they are monitoring closely.

Courtesy of Brian Boyle

He will need a series of open heart surgeries and related procedures during the first few years of life. His surgeries are palliative, not cures. He also has heterotaxy, which is when his organs are not in the correct location of the body and affection function. His lungs and liver are impacted, he does not have a spleen, and his intestines may be involved as well. Since he does not have a spleen he is at higher risk for infections. After a week in the cardiac ICU, his surgical team made the decision that it was time for his first major open heart operation to help improve his oxygen saturation levels. He had to be put on bypass during the surgery to help get more oxygenated blood to his lungs as they carefully placed a shunt in his heart.

Courtesy of Brian Boyle

There were complications after that first heart surgery, and his surgical team had to do a rapid response the following morning, quickly transitioning his ICU room into an OR and they had to go back in his chest right then and there to help save his life. The band around his pulmonary artery had to be adjusted and then a stent was placed within the shunt to help improve the blood flow. His levels slowly began to improve after this second procedure.

Courtesy of Brian Boyle

At the time of writing this, we have been in the cardiac ICU for over three weeks. He has a central line, is on the ventilator, and his medical team is cautiously hopeful that progress will continue. Due to the heterotaxy he has, they are also discovering that he has malrotation of his intestines, which will most likely result in a surgery in the future. His next open heart operation will be around four to five months of age, followed by another major procedure at around two years of age. He will most likely need other related procedures and cardiac catheterizations in the future as well.

Courtesy of Brian Boyle

We don’t know what the future holds for Liam. This journey has been a rollercoaster of emotions, some days have been absolutely awe-inspiring, and others, completely soul-crushing, as if happiness will never exist in our lives again. Always fearful of what we will face when we walk into his hospital room. However, over the past 9 months and three weeks, we have seen firsthand that these newborn babies with complex congenital heart disease have incredible strength and fight in them. I understand why they call them heart warriors because they are so brave and all they understand is what it means to fight and never give up.

Courtesy of Brian Boyle

When we have asked about what could have caused these very severe heart defects, many people have said that we were just unlucky. Pam and I have discussed this many times and we feel that we are so incredibly fortunate to have Liam in our life. In the few weeks that we have been with him, he has truly personified strength, resilience, courage, and has taught us how to cherish every single heartbeat. And for that, Pam and I both agree that we are the luckiest parents in the world.”

Courtesy of Brian Boyle

This story was submitted to Love What Matters by Brian Boyle. You can follow his journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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