Craniofacial Introduction Letter to a new school

The more education and knowledge we impart, the more understanding and compassion we can achieve for those with differences. The following letter, written by myFace Star, Kiran‘s mom, is a must read. It introduces Kiran, who was born with Goldenhar Syndrome, to his new schoolmates, encouraging candor and dialogue.

Moving to the area during COVID-19 times has made the traditional “hello” a little more challenging, so we wanted to take this opportunity to say “Hi neighbor!” We are very excited to join the Jaguar family, with our youngest son entering third grade (Caleb – 8 yrs old) and oldest son entering fifth grade (Kiran – 11 years old).

We wanted to specifically introduce you and your families to Kiran, who has a rare craniofacial condition called Goldenhar Syndrome. Kiran spent his first 8 months of life in two different NICUs (St. Barnabas and NYU) and has had a complicated medical trajectory since then, which includes 16 surgeries and over 60 hospitalizations. He will need additional surgeries as he continues to grow.

Due to his unique appearance, we anticipate that kids may have lots of questions for you. So below is a compilation of our own top “Frequently Asked Questions” from kids:

Question: What’s that thing on his head?
Answer: Since Kiran’s ears do not have openings (like our ears do), he needs a device to help him hear sound. The hearing device is called a BAHA – it stands for Bone Anchored Hearing Aid.

This device can be placed anywhere on your head (even your forehead!) and you can hear everything around you. But for best hearing, the device should be worn by the mastoid bone (a bone located behind your ear). 

Question: One eye looks different than the other eye. Can he see out of both eyes?
Answer: Kiran is blind in his right eye, but he can see perfectly well out of his left eye. You will often find him wearing a contact lens which has been painted to match the color and look of his left eye.

When Kiran was born, his right eye was very small, like the size of a pea. He wore different size contact lenses until he was 2 years old to help his eye socket widen. We often joke that Kiran sees better with one eye than most people see with two! (It’s true!)

Question: Why does his face look like this?
Answer: Kiran grew a little differently while in his mom’s belly, and some parts of his face did not develop completely. The right side of his face is noticeably different since his eye, jaw, chin, and tongue are smaller than typical. Kiran’s had 5 surgeries on his face so far and will have more as he continues to grow. All of the surgeries were to help him breathe and grow stronger.

Kiran’s craniofacial surgeon performed a novel jaw surgery on him when he was only 7 months old. He was one of the first kids to have artificial bone put into his jaw line.

Question: What is that backpack that Kiran wears with the tube hanging out of it?
Answer: Because it’s hard for Kiran to eat by mouth, he gets his nutrients through a tube that connects directly to his stomach. This is called a gastrostomy tube, or G-tube for short. The backpack holds the pump that controls how much liquid food he gets and how fast it goes into his tummy.

Kiran can “eat” when he’s sleeping. The pump will run even when he’s gone to bed for the night. And when he is sick, medicine is given through the tube instead of his mouth. That’s right – he doesn’t have to taste yucky medicine!

Question: Does Kiran like to play video games?
Answer: Oh yes!!! Fortnite is his favorite game right now, but he also plays Mario Kart with his brother. Kiran also loves to watch his iPad (especially YouTube) and tv/movies, travel, swim, play basketball, ride his bike, go on roller coasters, and spend time with friends and family. You may find it hard to understand his speech at first, but he is great about repeating himself or rephrasing his sentences so you know what he is trying to say. He is a whiz at electronics, so chatting over Messenger Kids or Hangouts is another great way to chat.

We can’t encourage you enough to ASK AWAY! Feel free to reach out with any questions you or your children may have as they interact with Kiran and Caleb. We are happy to help answer any questions, and no question is off limits (honestly!).

We look forward to seeing you this school year (virtually) and around the neighborhood!

Dana, Sharontha, Kiran and Caleb


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