September 2021 Newsletter
Welcome Back To School AND
Craniosynostosis Awareness

Get at least eight hours of sleep every night. Not enough sleep can make you irritable and cranky, and it can also make your stress and anxiety worse. Try to stick to a regular sleep schedule as much as possible, and make sure you’re getting enough rest so you can learn effectively at school every day.

Set aside time to do activities you enjoy. Even though school is starting again, try to make some time for your hobbies so you can unwind and relax. If you’re too busy during the week, make some time on the weekends. You can play a card game, do crafts, read books, or go outside and hang out in nature.

Ask your school administrators about what precautions they are taking. As schools make the decision to open back up during COVID-19, they may be implementing new procedures and policies to keep you or your child safe. If you haven’t received any news of changes in your schools, email or call the principal or administrator of your school about what they are doing differently. Some helpful questions to ask are:

• What safety precautions is the school taking to keep students safe?
• Will there be mental health services available to students this year if needed?
• How will you enforce the safety measures in place during school?

Sadly there is a lack of awareness about this condition, even among some medical professionals.

Craniosynostosis is a condition in which one of more of the joints or sutures between the bones of your baby's skull closes or "calcifies." If a baby has craniosynostosis, his or her brain cannot grow into its natural shape. Craniosynostosis can affect vision, development, and head shape.

Tune in to Dr. Mazzola's YouTube Channel

"Metopic craniosynostosis with trigonocephaly... I still can barely spell the words and try saying the whole thing 3 times fast.  These 3 complicated words have changed our lives forever, when we were sitting in Dr. Collins's office one afternoon in April 2021 being told that about our 8 month old. I left that appointment heartbroken that our perfect rainbow baby will need major surgery at the young age of 9 months, but there was another feeling, one that thankfully slowly took over as the months went by.. a feeling of hope and relief that he is in the absolute best hands.

There was also validation and anger. Validation because after being dismissed by his previous pediatrician we were being taken seriously and there was a problem with this ridge he had on his forehead since about 4 months old. And anger that it took  months of pressuring and ultimately switching doctors to be referred to a specialist.

Justin had craniosynostosis surgery on May 6 and we are amazed at his progress. He rocked his helmet for 3 months and we have a hard time finding his scar under all his hair. He is growing and developing beautifully now that his brain has room to grow.

I still struggle with the constant fear and uncertainty of what the future holds for Justin, but then as parents, do we ever not struggled with that?

He is closely monitored by the amazing team of professionals and I feel confident he will continue to thrive thanks to all of them.

I pray and hope he will continue to be on the right track, and while his story is still being written, I am forever thankful to have Dr. Collins, Dr. Morin, nurse practitioner Laura and everyone at the NJ Pediatric Institute guide us through everything! "

More Patient Stories