bennett's diagnosis.

Bennett’s diagnosis has turned out to be more extensive than we initially thought. Our sweet boy has Hemifacial Microsomia 😔

Hemifacial Microsomia (HFM) is a condition in which part of one side of the face is underdeveloped. The eye, cheekbone, lower jaw, facial nerves, muscles, and neck may be affected. It can include hearing loss from underdevelopment of the ear, a small tongue and macrostomia. It can also affect the heart and kidneys. (Bennett’s kidney ultrasound, EKG and echocardiogram were all normal!)

It is unclear what causes hemifacial microsomia. We are told that it is likely caused by a disruption in blood perfusion to his face around 6-8 weeks gestation. The condition happens by chance.

Doctors assure us that it’s nothing I did or didn’t do.. and I’ll spend the rest of my life trying to convince myself of that. The truth is, I will always blame myself.. my body.. for failing us. It’s difficult not to questions everything - Was it because I flew home in my first trimester when my dad was in the ICU? Did I not eat enough veggies? Could the positions I slept in be the culprit?

My pregnancy was a dream. No difficulty conceiving. Every ultrasound was normal. Genetic testing normal. No significant family history. I stayed active/worked out the entire time. Took prenatal vitamins religiously. No caffeine until my last trimester. No medications until my last few weeks (Zantac for heartburn) I often joked that things were too perfect and there must be a catch..

Our little guy’s journey will be a long one filled with many challenges and surgeries throughout life. While I’m terrified of all the unknowns we face... I’m comforted knowing we will not face them alone. Thank you to all of our family and friends for wrapping us in love, support and prayers. We are so grateful