Patient Stories - Wen’s Story
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 (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 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 She was withdrawn, losing weight and her skin looked horrible.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’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 ear reconstruction. 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!