Support Charlie’s Recovery from his Heart Surgery

Charlie was born in Tijuana, Baja California, Mexico on July 28th of 2021 and diagnosed with Down syndrome in the fall of 2021. Charlie was developing well, eating, playing and otherwise being a really happy baby until December when he started acting differently - he seemed to be having difficulty breathing. This affected his ability to eat and play. He was slowing down and not being as vocal so we were worried.

On December 28th we drove 3 hours to see his new pediatrician in San Diego who specializes in children with Down syndrome. After a quick look at Charlie, his doctor was concerned at the amount of retraction in his chest with each breath. He wanted an echocardiogram done ASAP so we were sent to the emergency room and Rady Children’s hospital. 

We waited in the ER until Charlie was admitted to the hospital. He was tested, poked and prodded by what seemed like an endless line of doctors, nurses and technicians. The hospital was grinding along because of a recent increase in patients with COVID-19. A test that should have been an hour or two wait was now taking four to six hours. After a nice man finally came with the echocardiogram machine we waited to hear from the doctors and as they expected it was found that Charlie had a hole in his heart between the two bottom chambers (or ventricles). This is called a VSD - ventricle septal defect. 

It turns out that congenital heart defects are common in children with Down syndrome - about half of babies diagnosed with Down syndrome have some sort of congenital heart defect. Charlie’s defect causes oxygenated and deoxygenated blood to mix between his ventricles and because the right side of the heart has more pressure, it is sending too much blood into his lungs. Hence his difficulty breathing. His heart is working overtime trying to make up for this imbalance and because of this extra effort it has become enlarged. 

We were moved to the cardio thoracic intensive care unit and a team of cardiologists began observing him. After 3 days, he was stabilized on two heart medications but the defect needs to be surgically repaired. Charlie is scheduled for surgery at Rady Children’s hospital on Thursday, February 10th, 2022. This happens to be right in the middle of congenital heart defect awareness week. 

After his surgery, he could be in the hospital for up to 10 days. Once he is discharged we will remain nearby the hospital in an Airbnb for two weeks so we can go to his follow up appointments and ensure we are close by in case he needs immediate attention from the Rady cardiology team. 

Many friends asked how they might support us so we have started this fundraiser to help keep us fed while Charlie is recovering and we are away from our home. We anticipate physical and emotional exhaustion coupled with the usual time spent caring for an infant. These funds will go toward Postmates, Uber Eats, Doordash, etc. This amount is just an estimate for two people to have three meals a day for 20 days total ~ $13 per meal. Any extra funds will go toward the cost of the Airbnb.