Heart Hero Rio

Heart Hero of the Month

January 2021

Story by, Heart Mom Chelsey

My pregnancy with Rio was a normal healthy pregnancy with no idea that we would soon be thrown into a world of unknowns. Rio graced us with his presence with an ugly blueish purple color.

My momma bear instinct knew that was not normal something was wrong and I was not taking “he’s cold” for an answer!

I kept asking the nurses in labor in delivery why is my baby blue?! Soon the routine pulse ox screen was done the alarm sounded I had no idea what that meant but they moved the pulse ox monitor to a different location and the alarm sounded again. After multiple attempts and multiple times failing the pulse ox screen, the NICU team was notified to get involved. The NICU Nurse came into our room and she took one listen to Rio’s heart and exclaimed “he has a very big heart murmur.” She kindly explained what that meant and that it could mean somethings up or it could be harmless.

They decided it was time to take him down to the NICU and run some tests to rule out possible “easy fix” causes. He was gone for what seemed like an eternity, they soon came back and explained to us that it was best if we transferred him by paramedics over to Children’s MN too have further testing done and to be at a hospital that was better equipped to take care of Rio.

Paramedics came into the room with Rio all hooked up to tubes and monitors. They explained what was gonna happen next and to say our see you laters around 4:30 am. Later that day on December 1st I received a phone call from a cardiologist at children MN telling me that our son would need to have surgery soon and he was born with a congenital heart defect called Pulmonary valve stenosis they knew it was critical but they didn’t know how critical it was until they had Rio in the cath lab on December 2nd at around 33 hours old for a procedure called a balloon valvuloplasty. During the procedure, they found that Rios pulmonary valve was opened to the size of a pinhead which explained the ugly purple color. He was ballooned twice during the procedure. We were told we weren’t out of the woods yet Rio doesn’t just have pulmonary valve stenosis he also has ASD (Atrial septal defect) and what I call a crazy right ventricle. Rios right ventricle did not form like a proper right ventricle as cardiologists have explained to me it would sorta be compared to a child that has hypoplastic right ventricle except for the fact Rios right ventricle did in fact form. It’s small and hard and more muscular than a healthy right ventricle would be. We were told to prepare for a hospital stay of about a week. Rio had other plans. After lots of ups and downs 23 days later we got to bring our Christmas miracle home. Rio finally got to meet his big brother.

For the first few months following Rio’s surgery, we followed up with his cardiologist every couple of weeks to ensure everything was stable. At the five-month mark, we were told Rio needed to have another balloon valvuloplasty done as his valve was returning to what it had been before his first surgery. On May 24th just days shy of 6 months old Rio went into the cath lab for a second time and was ballooned another 2 times. The surgery went well and we were told we may not need to stay the night. In true Rio fashion, Rio would spike a fever after surgery which would land us inpatient for a few days.

I’m happy to say that Rio has been able to live his best life and act like any other typical child. He has defined all the odds and has proven Doctors completely wrong with the grim diagnosis we were given at birth.

So what’s up with Rio now you ask?!

Rio is the kindest little kid with the biggest heart and the most contagious smile. He laughs, he fills our lives with so much joy! Rio was able to make it a good couple of years with no needed medical interventions and live life like any other kid, other than getting more tired out than the average kid when doing vigorous activity. We recently had another trip to the cath lab on September 29th in hopes that we would be able to close Rio’s ASD and balloon his pulmonary valve again if need be while in the cath lab already. Unfortunately, they were not able too close Rios ASD as of now due too the pressures it would cause on Rios crazy right ventricle, and in the long term if they were too close the ASD Rios right ventricle would become mad eventually with the high pressure and would land us back in the cath lab to reopen the ASD. He was successfully ballooned another 2  times while in the cath lab and the cardiologist told us it was needed. So we are thankful for that!  We have high hopes that Rio will be able to have his ASD closed in the future and as time goes on Rios right ventricle will continue to grow and become stronger as muscles do.  

What does our future look like?

Rio’s journey is not over but we are truly thankful to be where we are today on this journey.  We have been told Rio will eventually at some point have his pulmonary valve replaced and we remain hopeful that Rio will have his ASD successfully closed around the age of 7-8.