Heart Hero of the Month

JANUARY 2024

Story by, ❤️Mom Laiky

Our journey to becoming part of the heart community began at our 20-week ultrasound when the ultrasound tech and our doctor noticed something abnormal with Riggs’ heart. We were referred to Maternal Fetal Medicine where we had a fetal echo and received a diagnosis – Transposition of the Great Arteries. This is where the main two arteries carrying blood out of the heart – the pulmonary artery and the aorta – are switched in position. We were then referred on to our cardiologist Dr. Ameeta Martin – we met with her for another echo and she confirmed this diagnosis. In such a scary and unknown time for us, we were assured that this was very treatable with a short stay at Children’s immediately after birth waiting for open heart surgery, and that Riggs should be able to live a pretty normal life. We were so grateful to know ahead of his birth as it allowed us to meet the team that would be working with our baby and put a plan in place. Part of this plan was for us to deliver at Methodist Women’s Hospital in Omaha, and knowing what we know now – had we not, Riggs may not be with us. 

Come January, I went in for my routine 37-week appointment and Riggs heart rate was reading high pretty consistently so they decided to admit and induce me. Riggs was born on January 4, 2023. While we knew of his diagnosis prior to birth, his needs ended up being much more than we had prepared for due to an intact atrial septum, which was not allowing oxygenated and deoxygenated blood to mix. Riggs’ oxygen saturation was in the 40s and his heart rate was dropping. What we had anticipated to be a smooth transfer to Childrens ended up being very emergent.

Riggs went into cardiac arrest upon arrival at Children’s and was hooked up to ECMO while CPR was performed. Riggs remained on ECMO until he had open heart surgery at 6 days old. Although his heart was repaired, Riggs ended up with a multitude of other issues due to his rough entrance into the world and lack of oxygen to his organs when he went into cardiac arrest. We spent 86 long days at Children’s. In the first couple of days, Riggs had multiple seizures in a very short amount of time. When they were finally able to get him in for a CT scan, it confirmed there was plenty of proof of damage to the brain, however, there was still hope.

After receiving this news, I will never forget a doctor telling us before she saw the results, she was afraid she was going to have give us the devastating news that we needed to hug and love on our baby and tell him goodbye. Riggs also struggled with chylothorax post-operation and for most of our stay. He was dumping up to 700-800 mLs out of his chest tube daily, which is astronomical for his tiny body. They were having a hard time replacing the amount of fluid that was coming out and eventually, a transfer to Philadelphia was in the talks. While this was being discussed, Riggs’s chest tube popped out accidentally and never ended up needing to be replaced… a work of God.

The chylothorax made weight gain and wound healing (his chest incision) very hard as his body was ridding of a lot of his nutrition. Riggs’s chest was considered open for most of our stay and required a wound vac to close it – meaning Riggs didn’t wear clothes for the first time until like a week before he was discharged. Also, early on in our stay, an esophageal perforation (hole in his esophagus) was discovered after multiple attempts to replace an NG tube. We never got to know for certain what caused the perforation, but the most likely cause was a tool used during surgery. This left Riggs at high risk for infection and added stress to feeding. It also took a lot longer than they expected to heal and they were almost considering other interventions before it finally closed on its own…another work of God.

Riggs overcame so much more during his stay including arrhythmia issues, a diagnosis of mild pulmonary hypertension, an acute kidney injury, adrenal hemorrhage, a blood clot in the brain, among much more. Riggs went home at 3 months old weighing only one pound more than his birth weight. We went home with a feeding tube (ng), a large array of meds (which included giving two Lovenox injections a day), and a very uncertain view of what Riggs’ future entailed but we were just so happy to be home as a family. 

Since being home, we have only found ourselves back at the hospital for one overnight stay due to blood in the stool, which led to an MSPI diagnosis. We have returned for many follow-ups with all different specialists who have worked with Riggs and for the most part, there are not many ongoing concerns. Riggs recently had a heart cath to follow up on some collateral vessels between the heart and lungs that were discovered before his initial discharge. They thought these developed due to his respiratory distress at birth and they would be able to close them off. That heart cath gave us news we didn’t expect. The collateral vessels were supplying parts of the lungs that were not otherwise being supplied so they could not close them off. We were told these were not something that developed at birth and had to be just the way Riggs’s heart developed. The hope is that Riggs can live with these collateral vessels, however, if they do start to cause any trouble, the fix would be a second open heart surgery. Riggs’s diagnosis of TGA is typically a one-time surgery so we have never entertained the idea of another open-heart surgery and we aren’t letting our minds go there right now.

We continue follow-ups with cardiology, neurology, and nephrology. Riggs is on pace with most all milestones, has outgrown his pulmonary hypertension, and is down to only one med (a diuretic). He goes to Physical Therapy at Madonna once per week to support him in the areas he struggles with.

Riggs has defied all odds, having many doctors who were uncertain about his future who are now in disbelief at where he is currently. He is a medical miracle and a true gift from God.

“We are so grateful we were chosen to be his parents.“

We were so honored to be asked for Riggs to be featured as the January Heart Hero of the Month – the month of his first birthday and one-year anniversary of his repaired heart.

Since learning of Riggs’ diagnosis, Heart Heroes has been so impactful to us. From sending us the cape that still hangs in Riggs’ room today, to providing us a care package during those dark days at the hospital, to bringing awareness to Congenital Heart Disease, and providing a community of people who we can lean on for support and relate to.