A New Ear for Lila
Donation protected
2020 was a rough year for everyone, including our family. In addition to the loss of income that many families faced, our family also had 4 surgeries between 3 people. Due to a change in management companies, our health insurance policy switched mid-year and we had to pay TWO high deductibles for these procedures. And while we are still paying the bills, slowly but surely, there was supposed to be a 5th surgery that shouldn't have cost us much because our deductible was met, as was most of our out-of-pocket max. This 5th surgery was supposed to occur on December 29 (just before the end of the year) and would have been life-changing for an 11 year old girl named Lila.
Lila was born with a condition called microtia atresia. Basically its a fancy way of saying her left ear never fully developed and she has no ear canal (see photo below). While the doctors don't believe they can repair the ear canal, they CAN make her an ear that looks similar to her right ear through the miracle of 3D printing and modern medicine! It is a long procedure (10 hours) that consists of taking skin from behind her right ear, as well as her belly to cover a porous medical grade plastic that has been designed to closely match her right ear! Because we believe it is Lila's body and her choice, we wanted to wait until SHE wanted this surgery for herself before proceeding with anything. In July of 2020, she finally made that decision and we scheduled her surgery with the incredible plastic surgeon at the Microtia and Atresia Clinic at Vanderbilt University in Nashville. While we know a procedure like this can be INCREDIBLY costly, we were counting on the fact that we had met our deductible and almost our entire out-of-pocket max to make it financially possible. EVERYTHING was riding on this surgery happening in 2020, or it might not be able to happen at all because of the way our health insurance system works.
We didn't want to take a single risk. Lila and her 3 brothers were virtual learning already, we both took off work for weeks before the procedure to quarantine, and on the day of Lila's pre-surgery COVID test, we took her to a local urgent care where she tested negative, just as we expected she would. On our 350 mile trip to Nashville, we made sure to avoid people, wear masks, sanitize hands, EVERYTHING to keep her safe and not jeopardize this important day for her. On December 29, Lila and her dad went to the hospital and gave the test result to the nurses as requested, but there was a problem - the urgent care failed to date the test, so it couldn't be used. No problem, they will just test her again. At 7:35 am, 5 minutes after her procedure was supposed to start, the doctor came in and said that her test was positive. Lila actually thought he was teasing at first, but he was not. We told the doctor that there was simply no way for this to be possible because she had been quarantining for weeks and already received a negative just a few days earlier. The doctor explained that they could retest her, but it wouldn't matter because the hospital policy is to not ignore a positive, no matter how many negatives she gets immediately after. In one moment, Lila's chance at this surgery was gone. She was asked to leave after already being prepped for surgery. For our own peace of mind and safety, we had Lila retested the day after we returned and just as we suspected, her test was negative. The test in the hospital was wrong.
So here we are in 2021. As happy as I am to be DONE with 2020, the new year brings newly raised insurance premiums, a new deductible, a new out-of-pocket max and the surgery that WOULD have been affordable in 2020 is no longer financially possible. A faulty test, 3 days, and a terrible insurance system cost this kid her shot at a surgery that she so desperately wants. She wants to feel like other kids. She wants to be able to pull her hair back into a ponytail without people staring. She wants to be able to wear a mask with EAR LOOPS. She wants to be able to wear SUNGLASSES. Pierce her ears. So many things that we all take for granted. So for her sake, we are doing something that we have never done before and asking others to help us make her dream come true. The out of pocket max for an individual in our policy is $6,000 and I'm sure by the time the doctors, hospital and anesthesiologists submit their bills, we will reach it. We also will be facing a second quarantine period, a second trip to Nashville and some travel costs associated with that. If you would consider donating whatever you can to help Lila, we would be so grateful. Thank you!
Lila was born with a condition called microtia atresia. Basically its a fancy way of saying her left ear never fully developed and she has no ear canal (see photo below). While the doctors don't believe they can repair the ear canal, they CAN make her an ear that looks similar to her right ear through the miracle of 3D printing and modern medicine! It is a long procedure (10 hours) that consists of taking skin from behind her right ear, as well as her belly to cover a porous medical grade plastic that has been designed to closely match her right ear! Because we believe it is Lila's body and her choice, we wanted to wait until SHE wanted this surgery for herself before proceeding with anything. In July of 2020, she finally made that decision and we scheduled her surgery with the incredible plastic surgeon at the Microtia and Atresia Clinic at Vanderbilt University in Nashville. While we know a procedure like this can be INCREDIBLY costly, we were counting on the fact that we had met our deductible and almost our entire out-of-pocket max to make it financially possible. EVERYTHING was riding on this surgery happening in 2020, or it might not be able to happen at all because of the way our health insurance system works.
We didn't want to take a single risk. Lila and her 3 brothers were virtual learning already, we both took off work for weeks before the procedure to quarantine, and on the day of Lila's pre-surgery COVID test, we took her to a local urgent care where she tested negative, just as we expected she would. On our 350 mile trip to Nashville, we made sure to avoid people, wear masks, sanitize hands, EVERYTHING to keep her safe and not jeopardize this important day for her. On December 29, Lila and her dad went to the hospital and gave the test result to the nurses as requested, but there was a problem - the urgent care failed to date the test, so it couldn't be used. No problem, they will just test her again. At 7:35 am, 5 minutes after her procedure was supposed to start, the doctor came in and said that her test was positive. Lila actually thought he was teasing at first, but he was not. We told the doctor that there was simply no way for this to be possible because she had been quarantining for weeks and already received a negative just a few days earlier. The doctor explained that they could retest her, but it wouldn't matter because the hospital policy is to not ignore a positive, no matter how many negatives she gets immediately after. In one moment, Lila's chance at this surgery was gone. She was asked to leave after already being prepped for surgery. For our own peace of mind and safety, we had Lila retested the day after we returned and just as we suspected, her test was negative. The test in the hospital was wrong.
So here we are in 2021. As happy as I am to be DONE with 2020, the new year brings newly raised insurance premiums, a new deductible, a new out-of-pocket max and the surgery that WOULD have been affordable in 2020 is no longer financially possible. A faulty test, 3 days, and a terrible insurance system cost this kid her shot at a surgery that she so desperately wants. She wants to feel like other kids. She wants to be able to pull her hair back into a ponytail without people staring. She wants to be able to wear a mask with EAR LOOPS. She wants to be able to wear SUNGLASSES. Pierce her ears. So many things that we all take for granted. So for her sake, we are doing something that we have never done before and asking others to help us make her dream come true. The out of pocket max for an individual in our policy is $6,000 and I'm sure by the time the doctors, hospital and anesthesiologists submit their bills, we will reach it. We also will be facing a second quarantine period, a second trip to Nashville and some travel costs associated with that. If you would consider donating whatever you can to help Lila, we would be so grateful. Thank you!
Organizer
Joyce Rees
Organizer
Wentzville, MO