My journey, start to finish
The Story of My Ear
Five surgeries, two surgeons, a lot of hospital waiting rooms, and one implant that gave out this past April. Here’s all of it, with the actual photos.
Born with right-sided microtia & atresia
An underdeveloped right outer ear and no ear canal on that side. My family had no roadmap and definitely no other kid to talk to. That gap is the entire reason Connect clEARly exists.
CT scan and my Jahrsdoerfer score
A CT scan of my temporal bone decided whether I was even a candidate for ear canal surgery. I scored 8 out of 10 on the Jahrsdoerfer scale — roughly an 80% predicted chance it would work. If your child is being scored right now, I know exactly how that wait feels.
My sister, right before they wheeled me in
Nobody puts this part in the medical literature, but it mattered more than anything on the consent form. If you have other kids, bring them. Let them be part of it.
Canaloplasty — skin graft from my leg
At the University of Virginia with Dr. Bradley Kesser. He drilled a new ear canal and lined it with a skin graft taken from my leg. My hearing improved straight away, and a five-year follow-up audiogram confirmed it has held.
That mark on my ear in the photo is just a surgical pen, so everyone knew which side to work on.
These are real photos from my canaloplasty. I keep them behind a button because not everyone wants to see them — but a lot of parents have asked what is actually happening in there, and I would rather show you than let you imagine something worse.
A canal where there had never been one
The dark opening behind the remnant is the canal itself. This is the stage almost no family gets to see a photo of before their own child goes through it, which is exactly why I put it here.
Outer ear reconstruction — porous implant, skin from my arm
California, with Dr. Sheryl Lewin, for Porous Implant Ear Reconstruction. No rib cartilage. My ear was built around a high-density porous polyethylene framework, wrapped in a living temporoparietal fascia flap from under my scalp, then covered with a skin graft taken from my arm. Dr. Lewin’s site lists the abdomen, arm or opposite ear as the usual donor sites, so an arm graft is completely standard.
The framework my ear was built around
This is a porous polyethylene ear implant. Dr. Lewin’s site explains the design intent: the pores let your own tissue grow into the material, which is why the body can’t reject it the way people assume. Her newer implants are made by Su-Por from a single shaped piece, sized by high-definition 3D scanning to mirror the natural ear.
The ear cup, the arm dressing, and a lot of sleeping
The white cup guards the new ear while it heals — Dr. Lewin’s FAQ says patients typically wear one for about a month. The blue wrap on my arm is the graft donor site. Her guidance is no strenuous activity, swimming included, for six weeks. After that you go back to being a kid.
The pilot let me sit up front
Head still bandaged, flying back across the country. I include this one on purpose: a lot of families travel a long way for this surgery, and I want you to see that the trip home can be a genuinely good day.
Earlobe realignment
My earlobe hadn’t ended up sitting quite right after the reconstruction, so I went back to Dr. Lewin to have it corrected. Small operation, big difference — the lobe is the detail that makes an ear read as a real ear rather than almost-right.
An infection that needed surgery
This one wasn’t in the plan. Dr. Lewin’s published risk page lists infection as a rare but treatable complication of PIER, usually appearing between the first and second week after surgery, and notes that because the fascial flap has such a rich blood supply, infections respond very well to antibiotics. Mine needed surgical treatment on top of that. I got through it — and I’d rather families hear the honest version than one where everything goes perfectly first time.
The original implant fractured — and was replaced
The most recent one, and the one I never saw coming. The implant placed back in 2019 broke, and I needed surgery to have a new one put in. Seven years is a long time to carry something before it gives out.
Dr. Lewin’s own FAQ is upfront about this: the older 2-piece Medpor and Su-Por implants are more likely to fracture, and when it happens, surgery is required to replace the implant. Her 1-piece designs — the Lewin Ear Implant and 3D Lewin Ear Implant by Su-Por, each shaped from a single intricately formed piece of porous polyethylene — were built specifically to remove that weak point. If your child is having this surgery now, that is a question genuinely worth asking your surgeon.
Video-calling families all over the world
I started taking calls when I was 7. In 2023 I built this website so families could actually find me. It has grown into conversations across 30+ countries and 6 continents. Every single one has been free, and every single one still matters to me.