Liam’s Story

Brian and Pamela Boyle found out that they were expecting their second child in December 2018 right before Christmas. It was a very exciting time for their family, their 16 month old daughter, Clara, would soon be a big sister, and they were already starting to look at potential baby names. Around this time, Pam started to experience discomfort in her abdomen which was quickly diagnosed as appendicitis and she required emergency surgery. The medical team explained that there was a very strong likelihood that Pam would suffer a miscarriage over the next few days/weeks following the surgery, but Brian and Pam remained cautiously hopeful.

When they reached their week 20 anatomy/gender ultrasound, they were still pregnant and everything was showing up normal on the various ultrasounds over the past few months. The 20 week appointment started out very positive, everything looked and measured the way that it should at that point in time, they were having a little boy, and the were overjoyed. However, the final scan on the heart took longer than the previous measurements and then a few more team members were called in. Pam and Brian began to worry after several minutes went by. The Doctor and her team came in the room, turned on the lights, and said the words, “We are very concerned with your son’s heart”. Pam and Brian’s lives came to a devastating halt as they learned the severity of these complex and life-threatening cardiac defects.

Brian and Pam did their best to stay optimistic, and began the process of following up with experts in the field of pediatric cardiac defects, participating in weekly scans, ultrasounds, MRIs, and a few research studies that would follow the baby’s growth and development.
Fast forward to August 21, and Liam Joseph Boyle was born a healthy 8 lbs, Liam was immediately assessed by the NICU team in the OR and quickly transported by ambulance to his cardiac medical team that were waiting for his arrival.

Liam’s cardiac defects are 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 that they are monitoring closely.

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, which could affect proper function. His lungs and liver are impacted, he does not have a spleen, and his intestines may be involved as well. We need further tests, but he is unstable to go for testing right now and leave the cardiac intensive care unit. Since he does not have a spleen he is at higher risk for infections.