Raising Rare

“We were so excited to be pregnant with our first baby and found out early on that we were having a boy! At the 20 week ultrasound, he got diagnosed with bilateral hydronephrosis and so we were transferred to a high risk OB. At 27 weeks, I was diagnosed with polyhydramnios and shortly after went into preterm labor while on our Babymoon in San Diego! We were so afraid to have a premature baby in a different state away from home. Thankfully I stabilized and we were able to get back to Washington. I was monitored closely until my water broke at 32 weeks and we were admitted. Over the week my labor progressed and baby boy finally came via c section at 33 weeks 0 days. No one prepares you for being separated from your baby right away, but we were so thankful for the medical staff taking care of our son.

We were transferred over to the children’s hospital NICU after two days for testing on his kidneys. While there, the genetics team was doing a study for any babies born with abnormalities. Our son’s kidney abnormality qualified him for the study so we opted in…not expecting to test positive for anything. Well, at 2 weeks old, we got the results back…our son tested positive for a rare genetic disorder called CFC Syndrome.

We spent 43 days in the NICU. Seeing multiple specialists and focusing on feeding and failure to thrive. We went home with an NG Tube. The NICU days were some of the longest of my life. We would not have made it through without our amazing nurses, doctors, and NICU staff that supported us through the highs and lows.

Thankful for amazing healthcare and early diagnosis and state resources to help our son meet his full potential.” NICU Mama, Mairin