Slideshow of Patient Before and After Atresia Microtia Surgery
Bobbi’s Combined Atresia Microtia Surgery at the California Ear Institute
http://www.necn.com/searchNECN/search/widgets/2994/?episode=55837449 Read more here
Manny’s First Big Ear
Video from www.mannywilke.com
Cochlear Implant patient speaking at fundraiser event – Chelsea had an atresia microtia surgery at the CEI Medical Group to restore her hearing
CHELSEA Cheadle is hoping to lead a chorus of support for Queensland’s hearing-impaired children when the Butterfly Appeal takes flight this year.
The seven-year-old was born with underdeveloped ears and complete closure of the ear canal, but learned to speak, hear and listen, after help from the Hear and Say Foundation.
She stole the show yesterday at the launch of the Hear and Say Centre’s Butterfly Appeal alongside what is believed to be Australia’s first oral choir for deaf children.
Chelsea’s mother Simone said the Hear and Say Centre has given her daughter the opportunity to attend school and fit in with other children.
“Because of therapy Chelsea has been given a new lease on life, she loves going to school and we are very proud of her.”
The centre, which provides support to children born with hearing loss, is raising funds to allow more children to receive therapy. The appeal runs until April 28.
Click here to watch Video Clip
Video Interviews of a teenager – Combined Atresia Microtia Surgery Patient. Follow her progress through multiple clips.
Kinder, Gentler Imaging for Children, Relief to Parents
MiniCAT low-dose CT scans
From: enr-corp.com
The anxiety that comes with waiting for imaging results cannot be underestimated. After the scan is taken, the whole range of potential pathology, known or unknown, runs through the patient’s or parent’s mind with newfound and boundless creativity. And that unfortunately imaginative process can continue for days, if not over a week, while reports are generated and sent, images are requested, and images are finally reviewed. Read full article, click here
Patient Stories
SURGEON SEEKS TO RESTORE GYMNAST’S HEARING
GYMNAST Diego Neumaire at the championship in April.
“Diego Neumaire was born without ears 11 years ago to a poor family in Mexico. Despite the odds he has excelled, winning the National Championship of the Mexican Gymnastics Federation this past April.
His story has so compelled Dr. John Reinisch that the Hancock Park resident is donating his skills as a world-class surgeon in ear reconstructive surgery. He is also on a fundraising campaign to help pay $40,000 for hospital and travel fees.
“He’s pretty impressive. He looks like an Olympian,” said Reinisch. 
He’s also a good candidate for the technique Dr. Reinisch started 19 years ago that streamlined the surgery; Neumaire, who was born without outer ears, has a normal inner and middle ear.”
Diego is among the 10 percent of children with bilateral microtia, children who are born without both ears. In order to develop normal speech he wears a cumbersome, bone-vibrating hearing device.
“Many children with microtia are shy and introverted from their hearing loss and years of teasing at school. However, despite Diego’s visible deformity and poor hearing, he has become a spectacular gymnast,” Reinisch noted. “Diego is an amazing boy with enthusiasm, charm, talent and confidence. Although he has done remarkably well, his life with a hearing impairment and facial deformity will become increasingly more difficult as a teenager.”
The plastic surgeon became interested in ear reconstruction when he found ears often looked unrealistic after surgery. Results improved with porous polyethylene instead of the traditional method of taking a piece of the patient’s rib cartilage—which in Diego’s case would impact his gymnastic abilities. The new technique also cuts the required number of surgeries for two ears from 12 to two.
While Reinisch creates the outer ears, Dr. Joseph Roberson, a hearing specialist at the California Ear Institute in Palo Alto, will donate his services to build the ear canals and eardrum to restore hearing. “Dr. Roberson and I want to do the reconstructive surgery to help Diego reach his maximum potential in life,” Reinisch said.
The pair have teamed on several surgeries in the past six years, said Reinisch, a New England native who lives on Rimpau Blvd. with his wife Nancy.
He graduated from Harvard Medical School, and later founded the plastic surgery department at Childrens Hospital LA. As director, craniofacial and pediatric plastic surgery at Cedars-Sinai Medical Center, he performs about 400 surgeries a year, 80 of which entail ears.
Donations can be made to the Small Wonders Foundation, c/o Ed Solis, treasurer 717 Cole Ave., LA, CA 90038. The non-profit, whose purpose is to support children who need plastic surgery, was founded by parents of children that Dr. Reinisch treated.
My Story
“Bobbi was born with Bilateral Atresia and Microtia. God is taking Bobbi on an amazing journey to get ears! Bobbi has had her BAHA (bone anchored hearing aid) since she was three months old. She wears this hearing aid on a softband. She has asked for it the minute she wakes up and often tries to keep it on when she goes to bed. Bobbi has been receiving wonderful audiological services through her providers in Maine and New England as early as three months old and continues to be in speech therapy weekly and receives quarterly audiological updates as well. We create God and her proactive providers for the success she has today; up until recently we were waiting to have surgery for Bobbi when she was 10 or 12 years old. We were researching and looking at skin grafts and skin harvesting to make her an ear. That was until we attended the Microtia/Atresia conference in Texas in October 2009. There we met the doctors from the California Ear Institute and Cedars Sinaii Medical Group. Together, Dr Reinich and Dr Roberson can make Bobbi an ear! This surgery has a price tag of almost $46,000 per ear. Our community has embraced Bobbi and our family by posting several stories in the paper and on the the television state wide. By sharing this information with others, Bobbi has touched the hearts of many people. Shortly before Christmas 2009, an anonymous donor contacted us and offered to pay for the surgeries for Bobbi. Thanks to the generosity of Bobbi’s donor, we are headed to California in April 2010 for her first surgery and again in September 2010 for the other ear.” – Guerrette Family – Maine
Patient Story
I first met my daughter on October 10, 2003. She was 5 months old and living in an orphanage in China. I was there with a medical team looking for children that we could help. Wen Jing (Aisling) was a gorgeous and engaging child who except for a deformed ear appeared very healthy given that fact that she had spent the previous two months in an orphanage. I fell in love with her that day but left saddened. There was nothing we could do to help her. We didn’t know if she could hear, though we suspected she could at least a little, but there weren’t any treatment options available to her in a Chinese orphanage. There were two other children there who had similar deformities. I did not know what the deformity was called then, but that was my first encounter with a word and condition that is now a part of my life every day. I saw Wen Jing three months later and saw her condition had worsened. She was withdrawn, losing weight and her skin looked horrible. She was still gorgeous, but she was losing that spark in her eye and I cried over her thinking that this precious child would have to grow up in an orphanage just because her ear was little. But there was little I could do unless I could get her out. After convincing my husband, three months later I did just that. I took her out of the orphanage and brought her home to live with me and we later adopted her. We brought her to a western pediatrician who correctly diagnosed her condition as aural atresia and microtia. It was then that I began my search for how to help her. Living in China our options were limited, but we brought her to the local ENT hospital where we were told that her right ear was fine and that nothing could be done with the left。 Searching online to find out more information, I found that not to be true. There was just nothing we could do in China.
I soon found a Yahoo group for parents with children with atresia and microtia and there learned about doctors in the US who specialized in dealing with this. We still had to wait though. Since Wen Jing’s adoption wasn’t finalized, I couldn’t bring her to the US to be seen by any of these surgeons. After her adoption was finalized, we brought her to a few surgeons and still felt uncertain about what we would do. There were choices and decisions to be made, but we still had some time until Aisling was old enough for any surgeries. In the meantime, her orphanage contacted us to tell us that they had another little girl who had the same condition and would we be willing to take her home too! We agreed knowing that what we could do for one child we could do for two.
This past October, I brought both of my girls to California Ear Institute for their conference on Microtia and Atresia. There we learned quite a bit about what we were facing and our options, but most importantly, we got to meet and speak with the different doctors about MY children and what would be the best options for each of them. I knew that day of all that I read about and the all doctors that I’d met, that Drs. Roberson and Reinisch would be who I would entrust my girls’ care to.
We went back home and began to make the arrangements for when we would return to the states for Aisling’s atresia repair and Medpor outer eareconstruction. Everything was going smoothly until we contacted our insurance company about reimbursement for our travel costs. We have an American insurance policy for foreignersso this was not an unusual request. Our policy, however, requires that we go to the nearest facility if travel is to be reimbursed – which they said would be Hong Kong. However, the approach to correcting atresia and microtia in Hong Kong was to remove the ear, create a prosthetic and use a hearing aid. We asked for help from Sheri Byrne with the Advocacy Program of Let Them Hear Foundation. With her help and without having to resort to a formal appeal, she was able to help the insurance company recognize that a restoration of hearing was a realistic goal.. The insurance company agreed to cover the cost of travel to the nearest facility where atresia repairs were performed, which was Singapore. That was acceptable to us – so they reimbursed that portion of the tickets and we headed off to California!
We just returned a few days ago and Aisling is doing great. She just loves that she has a new hole!! She looks at it everyday and tries to whistle to see if she can hear it! She doesn’t know how to whistle though….. Aisling’s middle ear bones are present but spaced too far apart for them to be able to repair. After she heals and we recheck her hearing, she may be a candidate to have her middle ear bones replaced with a titanium prosthesis, designed and developed by Dr. Roberson. If not, having an ear canal and eardrum now creates more options for assisted hearing for her. Aisling is a bit worried about more surgery, but we have focused all along on the positive aspects of it and she is looking forward to getting her “big ear, just like Mommy’s”. During the time we were in California for her surgery, everyone was just fabulous and they took great care of us. Aisling never cried from pain and was never scared. That’s a pretty amazing staff to pull that off!! The only time she was upset was after several days and that was because she missed her big brother and little sister. She was also confused why we couldn’t bring Hannah to get her ear repaired too! We told her not to worry – we’d come back when Hannah was a big girl like her to get her a new hole! To which Aisling said, “then I will tell her to be brave too!”
Our experience with CEI and LTHF doesn’t end there, though. My husband and I work helping access healthcare for Chinese orphans and children with special needs. On several occasions, their team has helped us in diagnosing and advising on treatment options for children living in orphanages in China.
Thank you to all the team of California Ear Institute and Let Them Hear Foundation. You are wonderful! My family is very grateful for all you have done to help us!
Bart and Deirdre Daniel have founded The Morning Sun Center of Hope, a non-profit organization that provides charitable healthcare services to orphans in China. For more information on the work of The Morning Sun Center of Hope, please visit their website at www.mschope.org
Atresia Repair FAQ’s Treatment Options & Alternatives
