Support Baby Kian's CHARGE Syndrome Journey

Hello family and friends, as you might know, Quentin Capuson and Lauren Sibolski welcomed a new baby boy, Kian, into their lives on Thursday, 4/17/25 at 3:19 am. The proud parents welcomed their son, who weighed in at 5 pounds and 12 ounces, measured 18.5 inches long, and with a full head of black hair, into this world with so much love in their hearts.

During the pregnancy, doctors discovered that baby Kian was going to face some challenges after birth. Q and Lauren were informed that Kian was diagnosed with CHARGE syndrome, which is a rare genetic condition that affects about 1 in 10,000 live births.

CHARGE is an acronym that describes the most common symptoms presented in newborns (not all newborns will have all symptoms; every case is unique):

C – Coloboma and Cranial Nerve Abnormalities (missing tissue in eye/paralysis of one side of the face)

H – Heart Defects (present at birth)

A – Atresia of the Choanae (narrow or blocked nasal passage)

R – Restriction of Growth and Development (needs more time to meet height/weight and developmental milestones for age)

G – Genital Abnormalities (varies for each child)

E – Ear Abnormalities (ears that stick out or lack lobes, could lead to deafness)

Kian will be transferred to the cardiac NICU at Strong Memorial in Rochester and be put under close, around-the-clock monitoring. Once baby Kian gets stronger, he will have open heart surgery in two to three weeks time. While so many things are still up in the air at this moment, we do know that little Kian will need a number of surgeries after that.

With this unexpected diagnosis, there will be medical bills, travel costs, and other expenses that are a major concern for this young family. According to The CHARGE Syndrome Foundation, a typical child diagnosed with CHARGE will see about 17 different medical specialists and have more than a dozen surgical procedures, all before they are 10 years old.

We ask our family, friends, and community members for any support that they can give at this time, whether it's financial or with a simple share. We thank you all for your kindness and support.