Thursday, August 16, 2018

Mirace Walk 2018

Every year since Zadie was born, our family has participated in the Miracle Walk, which benefits the Saint Barnabas Medical Center Neonatal Intensive Care Unit (NICU), where Zadie was for 10 weeks following her birth in 2011.  The doctors, nurses and staff are incredible there, and the Walk helps ensure that wonderful care continues!

It's also a really great way to reunite with our nurses and doctors and fellow NICU families.  It's always a great day.  Please consider walking or donating by clicking on the following link!  Thank you!



Our family at the 2017 Miracle Walk

Friday, June 22, 2018

A cleft palate is not a cleft lip!

What do you think when you hear the words cleft palate?

If you have no personal experience with it, you might automatically think of a cleft lip, which is usually visible before it's repaired since it involves the actual lips of a person's mouth. You might see a scar in the space between the nose and the lip on someone who's had a cleft lip repaired.

However, cleft palate is different.  The palate is the roof of the mouth, which you can't see when casually interacting with someone.



Kids born with Pierre Robin Sequence (PRS), like Zadie, are often born with a cleft palate.  It's usually discovered at birth or soon after.  A cleft palate is difficult to diagnose in utero, which is why a diagnosis of PRS is often a surprise.  In Zadie's case, I had weekly ultrasounds leading up to her birth, and the cleft palate was not detected.  Cleft lip, which is more likely to be diagnosed in utero, is not usually seen in PRS babies.

I can't tell you how many times I've told someone about some of Zadie's issues and they say something like "wow, you can't even tell!" Hopefully, this info will help increase awareness and knowledge!

Facts about cleft lip and cleft palate:

https://www.cdc.gov/ncbddd/birthdefects/cleftlip.html