Baby Boy, Axton Ramirez's Medical Bills

We are currently expecting our second child, a baby boy due on December 15, 2023. 

At a routine anatomy scan, we found out that our baby boy has a Congenital Heart Defect: Pulmonary Atresia with an Intact Ventricular Septum & a Hypoplastic Tricuspid Valve.

His pulmonary valve, which sends blood from the heart to the lungs, is completely closed. This also caused his right ventricle to be smaller than it should be (hypoplasia).

1/100 babies are born with heart disease, isn’t that crazy to think about? This specific defect is not genetic, it just happened…one out of millions of cells just decided to do something different. 

We have been seeing a pediatric cardiologist who has been/will be monitoring his heart every few weeks. We will also have a surgery consult closer to my due date. Once he's born, they will do more scans directly on him to confirm their diagnosis and move forward with a plan. I had to transfer care from North Central Baptist to University Hospital here in San Antonio, because that is the best place with the best teams to take care of him.

In utero, everything is okay since I breathe for him, and he doesn’t really need to use the right side of his heart right now. Right after he is born and needs blood flow to his lungs, they will give him medication to keep some holes in his heart open that normally close within a week of birth. He will have to undergo a procedure within the first week of life - most likely a Balloon/Stent to keep the hole up top open (the patent ductus arteriosus if anyone is curious). How long he's in the hospital depends on how he does, of course, but they told us to expect at least 1 month if everything goes as planned. 

Around 6 months old, he will most likely require open heart surgery (Bidirectional Glenn Shunt), and then possibly again at 3 years old (Fontan Procedure) to keep up with the heart's growing size. These are more complicated procedures, so they're a little hard to explain on here.

Around age 40, his heart will probably begin to fail, and he would require a heart transplant. However, the cardiac world is always advancing in amazing ways, so we have hope that this wouldn’t be the case and there is a cure by then!

Most of these procedures SHOULD be covered with insurance, but we still have to hit deductibles and such. We will be going to weekly cardiology visits within the first 6 months, possibly a year, so all of the co-pays and whatever isn’t covered will add up quickly.

**Everything that is donated to this fund will ONLY be used towards medical bills and the 3 planned procedures/surgeries.

VENMO if it's easier for you: @alispencive

It's amazing that doctors were able to see this on a sonogram, truly. We are very blessed to at least have a plan in place vs. an emergency situation where he stops breathing at the hospital or at home and no one knows what’s going on.

40 years ago, there would have been no plan at all, and he would’ve had a 0% chance of survival. Medicine has and is still coming a long way!

Please keep our baby boy and his special heart in your family's prayers. We love you all, and thank you for being a part of our lives and this upcoming journey.

"Be strong in the Lord and in His mighty power." Ephesians 6:10

-Ali, Michael & Leighton