This is our beautiful son, Clayden. He is 2 months old.

This is his story

Since he was born, he has had retractions when breathing. I brought it up to his pediatrician, and she said to monitor weekly to look for improvements. Fast forward to his next pediatrician appointment, she heard diminished breath sounds in his left lung, so she ordered an X-Ray. The x-ray showed an enlarged heart, so he was referred to a cardiologist. The cardiologist saw him for the first time and immediately said “go to the ER, he has right heart enlargement, and two holes, I want this looked at closer”. When we were admitted to our local hospital, they did a repeat echo (ultrasound of the heart) and found an ASD, PFO, and right heart hypertrophy (enlargement). They ultimately discharged us, and said to follow with the cardiologist.

The cardiologist and pulmonologist said in their heart they feel something is wrong. They recommended to bypass all outpatient appointments, and go to ER at a children’s hospital about 2 hours from where we live. We are here now, and after a CT, X-rays, and a head ultrasound, we finally have an answer for the enlarged heart.

An extremely rare congenital Vein of Galen Malformation in the brain.

We are heartbroken, scared, and unsure of the future. As I type this, we are still in the hospital waiting for a plan as test after test is being done.

I, Clayden’s mom, have not left the hospital since we arrived here. My husband, Tyler, has had to stay home to take care of our 3 years old daughter and work everyday to provide for us through this difficult time. This has thrown an unexpected wrench in our lives, and we just want the best for our son.

We are asking for help while we try to navigate the future. We are still in the unknown, as Vein Of Galen is a 1 in 3,000,000 rarity. There is little research, and little known. Thank you so much for taking the time to read about our sweet boy.