- Let Them Hear Conference
- Visits With Various Doctors and What We Found
- Dr. Burt Brent
- Dr. John Reinisch and Dr. Sheryl Lewin
- Dr. Joseph Roberson
- House Ear Institute (LA)
- BAHA
- California Early Start Program
I attended the "Let Them Hear Foundation" conference in Palo Alto in October 2006, and I met with some of the leading doctors in the overall field: Dr. John Reinisch, Dr. Joseph Roberson and Dr. Burt Brent. The conference is incredibly helpful and worth going to, if not for any other reason, it's a great way to meet some of the leaders in the field without having to travel to their respective offices.
VISITS WITH VARIOUS SPECIALISTS AND WHAT WE FOUND
Over the past years, we have lived in both San Francisco and Los Angeles and made many visits between the two cities to visit doctors. I haven't kept track of exactly how many, but we've probably seen between 10 - 25 of specialist reconstructive surgeons, ENTs, audiologists, etc. at Cedars Sinai (LA), University of California at San Francisco (UCSF), the California Ear Institute (Palo Alto), the House Ear Institute (LA) and others. What we found was that, even at very elite hospitals, there aren't that many doctors and specialists who are very knowledgeable about microtia and atresia. In fact, I felt like I was educating quite a few of them about microtia and atresia. Despite their lack of expertise, not one said what they should have: "This is a highly specialized area, and you should really talk with doctors who have seen hundreds of cases. There are only a few such doctors in the US."
Based on my admittedly narrow view, I would only entrust my kid's ear to a doctor who has performed hundreds of canalplasty or microtia repair surgeries.
For canalplasty, the leading doctor without a doubt is Dr. Joseph Roberson at the California Ear Institute in Palo Alto. I've heard Dr. Brad Kesser at UVA School of Medicine as a specialist in atresia repair as well - though I do not know of anyone personally who used him for atresia repair.
For microtia repair, the leading doctor for the rib cartilage method is Dr. Burt Brent in Northern California near Palo Alto and San Francisco. Dr. Arturo Bonilla in San Antonio seems to make good looking rib graft ears as well. For the medpor method, Dr. John Reinisch, Dr. Sheryl Lewin (both in Los Angeles) and Dr. Thomas Romo in New York City seem to produce the best results. Unfortunately, I've seen the results from other doctors' work, and they can really make the ear look much worse if they haven't had a lot of experience. If the doctor cannot provide you with a lot of photos of patients who ended up with ears that you'd be happy with as a patient, you should probably not use that doctor.
For example, for several years, we had an annual multi-hour clinic visit to the Cranial Facial team at UCSF and they tracked Ben's progress over the years. UCSF is a world-renown medical institution with really smart and talented doctors. Initially, we learned a lot through the process. They were selling us on having Ben's microtia repair done with their reconstructive surgeon, "Dr. H." Dr. H. did great cleft palate repairs and general facial plastic surgery. He indicated that he had done "about two dozen" microtia repairs (this was a number of years ago, so maybe the number is higher now), but he couldn't show me photos of microtia patients that looked great. So, ultimately, I did not think the reconstructive surgeon was enough of a specialist on microtia. Last year (2010) was our last annual visit there, and we have decided to stop that visit.
DR. BURT BRENT
I was particularly interested in Dr. Brent because I had studied his website, and the ears that he created are really beautiful. As you probably know, Dr. Brent is the leading surgeon of the rib graft method of ear reconstruction / microtia repair. He is an artist by training and treats each ear like a work of art. Also, I thought it would be ideal to have an ear made 100% of Ben's own body. When I met Dr. Brent at the Let Them Hear Conference, he was awesome and had a great, gentle manner. He definitely instills a lot of trust. I have just dug up my correspondence with Dr. Brent dated February 7, 2006 (when Ben was less than four months old!) sending him photos of Ben's ear. This makes me remember how scared I was not knowing anything about microtia and just wanting to learn as much as possible. In particular, I remember health insurance concerns - and not knowing what would be covered and what would not be covered being a looming concern. At the time, and this still could be the case, Dr. Brent was not contracted with any insurance companies, and not understanding how the insurance process works, that worried me.
DR. JOHN REINISCH AND DR. SHERYL LEWIN
Our pediatrician, who is not familiar with microtia aural atresia, but is a wonderful pediatrician, referred us to speak to Dr. Lewin when Ben was three years old. I actually knew very little of Dr. Lewin at the time, but I had previously met Dr. Reinisch at the Let Them Hear Conference and had not really been considering medpor surgery. As mentioned previously, one wonderful thing about Dr. Lewin (and I hope this doesn't go away) is that our HMO (I think it was United Health Care) covered her, and she is part of a lot of networks.
After visiting with Dr. Lewin, we were definitely impressed by the number of microtia repairs she had done, and by how good they looked. Check out this YouTube video of a number of before and after Dr. Lewin patients. Also, Dr. Lewin is very personable and nice. While both she and Dr. Reinisch clearly have a deep love of their patients, she has a more maternal and playful personality than Dr. Reinisch. By this point, Ben was about three +, and that is around the age when the surgery can be considered. Dr. Lewin said that if we were considering getting the surgery and the combined surgery, we needed to get a CAT scan of Ben's ear anatomy to see if canalplasty were an option.
Update as of August 2012: Dr. Lewin is no longer in practice with Dr. Reinisch. See this link for her current practice website and results.
An Aside on Husbands and Family. My husband was not sold on the concept of surgery at all. In fact, I think it's safe to say that he was somewhat opposed to doing anything. He thought Ben was doing really well and was rightly very concerned that that surgery carried such major risks. He was especially concerned about the canalplasty because of the risk of damaging the facial nerve that controls movement in the face. I had been researching these topics for years, and my husband was substantially less apprised of the details than I. I felt (perhaps unjustifiably) that when I was trying to gather information, I was met with questioning from my husband and family. Everyone clearly had the best interests of Ben in mind, getting my husband up-to-speed on the details, pros and cons, etc. - so that he was comfortable enough with any decision we made - was a challenge. His in-going perspective was that probably no surgery was the best option, but if we were to consider surgery, it would be better to go with the rib graft method. Therefore, we had years to consider that option. My husband accompanied me to the visit with Dr. Lewin more out of respect for me and as part of the educational experience.
DR. JOSEPH ROBERSON AND THE CALIFORNIA EAR INSTITUTE
I met Dr. Roberson at the Let Them Hear Conference in 2006 and then again in 2010 when Ben had his CAT Scan. I found him to be amazingly dedicated and passionate about his work. In coordination with a number of partnering doctors, Dr. Roberson donates his time and resources to helping kids around the world with microtia. Furthermore, considering that he does not need to be "in network" with so many insurance companies - his doing so is a generous and real benefit and service to his patients.
HOUSE EAR INSTITUTE
We had heard a lot about the institute, and we were referred there by our terrific pediatrician, Dr. David Keene, when we moved to Los Angeles. We had also met a young guy working up at the Mountain High Ski Resort who had had canalpasty at the House Ear Institute, so we knew they were at least familiar with the condition. Hoping to find a good local ENT, we went but were somewhat "turned away" by the doctor/surgeon. He "scolded" us for seeing specialists, made us feel like we were being too curious for trying to find a regular ENT for Ben, and told us to chill out and wait a few years. I suppressed the memory of his name or else I would include it. I think that he was trying to be helpful...
BAHA (BONE ANCHORED HEARING AID)
Even though he did not seem to be an expert on aural atresia, the ENT surgeon at UCSF, Dr. Lawrence Lustig, was instrumental in helping us get a BAHA for Ben when he was about two years old and have it supported by health insurance. So, as you can tell, every doctor is usually as helpful as they can be. Dr. Lustig worked hard to write a specific note (based on a draft from Dr. Roberson) to the insurance companies attesting to the medical necessity of the BAHA, and though it took about 3 months to get approved by my insurance (part of Brown and Toland), we did finally get the $4,300+ BAHA covered.
Wileen Chang, the senior audiologist at UCSF, was by far the most helpful and knowledgeable - and she was critical to helping get the insurance coverage, talking with the insurance company and procuring the BAHA for us. We also purchased the loss/damage insurance policy on the BAHA - which was absolutely critical. When you first purchase the BAHA, I'd highly recommend getting the insurance that is offered from the Cochlear Company. Then, after that one-year policy runs out, I'd recommend getting a new policy via another third party insurance company. Ours is through a company called Ear Service Corporation (ESCO). I can't remember how many BAHAs we've gone through...
CALIFORNIA EARLY START PROGRAM
One of the wonderful programs that we were introduced to in the hospital when Ben was born was the California Early Start Program which helps ensure that children born at risk of having developmental challenges get the support that they need to develop well. The Early Start Program provided support such as speech and hearing specialists that came to our home on a regular basis during the first few years of Ben's life. I think that they really helped him out a lot - and they also urged us to get a BAHA for Ben.
Ben started interacting with deaf and hard-of-hearing teachers in San Francisco when he was three months old. I fondly recall Katie Setser (beautiful Katie was probably Ben's first love!) and Mindy Zlotnick, both hearing impaired educators with the San Francisco Unified School District (SFUSD) as being very helpful and wonderful. Mindy shared a lot of research with us, and helped us to connect up with another local family with microtia who had gone through bilateral microtia repair with Dr. Reinisch. Mindy, as well as our really wonderful pediatrician in San Francisco, Dr. Eileen Aicardi, also helped us to set up recurring insurance-covered audiological visits to the San Francisco Center for Speech and Hearing (later renamed to the Hearing and Speech Center of Northern California). Ben's various audiological tests were always a bit challenging, as sometimes he'd cooperate and sometimes he would not. As he got to around 1 1/2 years, we never knew if he was not hearing or just ignoring the audiologist. Before moving permanently from San Francisco to Los Angeles, a SFUSD gentleman named Joe Canon replaced Mindy and became Ben's primary speech therapist, and Ben really liked Joe as well.
When we moved to Los Angeles, I was saddened that the terrific support that we had received in San Francisco (primarily through the school district) would end. Initially, the experience in LA at the pre-preschool level was great. A woman named Kristine Henderson with the Los Angeles Unified School District (LAUSD) team was so wonderful. She played great games with him that helped him want to learn to talk. Other than Kristine, we interacted with some LAUSD deaf and hard-of-hearing specialists who were quite sub par and who treated me like a second-class citizen. We had a bad experience when Ben went in for a LAUSD evaluation with a bunch of bully-ish school so-called "experts" who were quite rude and dismissive of anything I said and who clearly had met prior to the meeting with me and they had all agreed on what they were going to say. The worst by far was Macia Makarenco, a school psychologist who was very condescending to me - and her side kick was Tova Goldberg, the speech pathologist. Unfortunately, Kristine wasn't able to make the meeting. Recalling that meeting makes me wonder about the tenure system for public school employees...
It was sad when Ben "graduated" to the next level up (probably when he turned three) and cheerful Kristine was no longer Ben's DHH teacher. Then the case was taken over by someone who I'll call "AMcB." "AMcB" just lacked the understanding and, quite honestly, "kindness" that nearly everyone else we'd interacted with had. Fortunately, a wonderful woman named Abby McBride, who is partly deaf / hard of hearing herself, was also part of the new team.
I also attended at least a couple of group meetings organized by LAUSD for early childhood-age children with hearing impairment. The meetings were of varying value - but I always learned something. At one meeting, the LAUSD teacher was making reference to the surgical options for microtia repair, and she mentioned Dr. John Reinisch and Dr. Sheryl Lewin, his more junior partner. That was the first time I had heard of Dr. Sheryl Lewin. I asked if Dr. Lewin's ears were as good as Dr. Reinisch's. She whispered to me that they both did great medpor ears, but that she thought Dr. Lewin's were tops. Another positive experience through LAUSD was that we got a very accurate audiological reading from their experienced audiologist, Stephanie Pogorelsky. All of these services were free, supported by the state, so my eyes were opened to some of the really terrific services available to people who work hard to pursue them.
