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Microtia, Atresia, and Goldenhar's Blog
Microtia/Atresia Conference
We highly recommend this conference to anyone looking to find out more information. You can read more about our visit to last year's conference in the blog archives.
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Our Family...
We are the Ottleys: Brian, Becky and kids Cameron, Lauren, Kara, and Abby.
On December 8, 2004 ,our oldest daughter Lauren was born. Shortly after her birth, there was some concern that she had a problem. She was later diagnosed as having Goldenhars syndrome which can include a variety of symptoms displayed in different ways. Lauren was found to have microtia with her left ear, a slightly shorter jaw on the left side, a cyst on her left eye, and some vertebrae abnormalities.
To most, it is probably an unknown condition as it was to us. We started this blog to keep family members and friends informed of her progress. We also would like it to be a resource for parents who may have children that are born with this condition and are looking for answers to their questions. Hopefully our journey will help someone with at times overwhelming decisions and situations. It is a continuous journey so thanks for experiencing it with us.
After Lauren's birth, we have seen many doctors. When she was about a week old we saw a team of surgeons at Primary Children's Hospital in Salt Lake City, Utah. We have seen this team every year in her life. We have seen an ear doctor for the microtia ear, an eye doctor for the cyst, a plastic surgeon for the jaw, an orthodontic surgeon, and a speech therapist.
As all parents will find out, there are many options and we stumbled upon more options by a neighbor of my mom who mentioned a procedure we were not made aware of by the local doctors. It was a procedure being done on the east and west coasts. The procedure could be done at an earlier age, included less surgeries, and her hearing could be improved sooner. This procedure is using an implant called the Medpor implant. It is made of polyethylene and has pores in it so that tissue will incorporate into the implant. The surgeon who developed this technique is Dr. Reinisch in Los Angeles, California. His protege is Dr. Lewin who will be doing Lauren's surgery. It involves two out patient surgeries for the outer ear and one for the atresia repair to improve hearing.
There are other great procedures being done for microtia kids. The other one that has been done longer is harvesting rib cartilage and sculpting an ear with that material. This procedure includes four surgeries plus another surgery for the atresia repair to improve hearing.
Other options for outer ear reconstruction include using a prosthetic and doing nothing surgically.
One thing that helped us make our decision is attending the atresia/microtia conference in Palo Alto California. It is an annual conference put on by the Let Them Hear Foundation for parents. There you will be presented with different procedures, you will meet the doctors, and the best part is they will do consultations and meet with your child to customize their surgical plan for him or her.
What we have learned is these surgeries are extremely specialized. Find surgeons who have a lot of experience. That is why we will be traveling for most of Lauren's surgeries. Dr. Roberson who does atresia repair, does 2-3 ears a week. Our local surgeon does maybe one a year. Dr. Reinisch, Dr. Lewin, and Dr. Brent do about 2-3 ears a week. Our local outer ear specialists do maybe 1-2 a year. Particularly with the outer ear, if you don't go with a qualified surgeon, the end product can be unsatisfactory.
As you read this blog about our surgeries, keep in mind that we made what we thought is the best decision for our family. As a parent YOU ARE THEIR ADVOCATE and after all of your efforts you will know what is best for your child and your family.
On December 8, 2004 ,our oldest daughter Lauren was born. Shortly after her birth, there was some concern that she had a problem. She was later diagnosed as having Goldenhars syndrome which can include a variety of symptoms displayed in different ways. Lauren was found to have microtia with her left ear, a slightly shorter jaw on the left side, a cyst on her left eye, and some vertebrae abnormalities.
To most, it is probably an unknown condition as it was to us. We started this blog to keep family members and friends informed of her progress. We also would like it to be a resource for parents who may have children that are born with this condition and are looking for answers to their questions. Hopefully our journey will help someone with at times overwhelming decisions and situations. It is a continuous journey so thanks for experiencing it with us.
After Lauren's birth, we have seen many doctors. When she was about a week old we saw a team of surgeons at Primary Children's Hospital in Salt Lake City, Utah. We have seen this team every year in her life. We have seen an ear doctor for the microtia ear, an eye doctor for the cyst, a plastic surgeon for the jaw, an orthodontic surgeon, and a speech therapist.
As all parents will find out, there are many options and we stumbled upon more options by a neighbor of my mom who mentioned a procedure we were not made aware of by the local doctors. It was a procedure being done on the east and west coasts. The procedure could be done at an earlier age, included less surgeries, and her hearing could be improved sooner. This procedure is using an implant called the Medpor implant. It is made of polyethylene and has pores in it so that tissue will incorporate into the implant. The surgeon who developed this technique is Dr. Reinisch in Los Angeles, California. His protege is Dr. Lewin who will be doing Lauren's surgery. It involves two out patient surgeries for the outer ear and one for the atresia repair to improve hearing.
There are other great procedures being done for microtia kids. The other one that has been done longer is harvesting rib cartilage and sculpting an ear with that material. This procedure includes four surgeries plus another surgery for the atresia repair to improve hearing.
Other options for outer ear reconstruction include using a prosthetic and doing nothing surgically.
One thing that helped us make our decision is attending the atresia/microtia conference in Palo Alto California. It is an annual conference put on by the Let Them Hear Foundation for parents. There you will be presented with different procedures, you will meet the doctors, and the best part is they will do consultations and meet with your child to customize their surgical plan for him or her.
What we have learned is these surgeries are extremely specialized. Find surgeons who have a lot of experience. That is why we will be traveling for most of Lauren's surgeries. Dr. Roberson who does atresia repair, does 2-3 ears a week. Our local surgeon does maybe one a year. Dr. Reinisch, Dr. Lewin, and Dr. Brent do about 2-3 ears a week. Our local outer ear specialists do maybe 1-2 a year. Particularly with the outer ear, if you don't go with a qualified surgeon, the end product can be unsatisfactory.
As you read this blog about our surgeries, keep in mind that we made what we thought is the best decision for our family. As a parent YOU ARE THEIR ADVOCATE and after all of your efforts you will know what is best for your child and your family.
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- Brian and Becky
- Salt Lake City Area, Utah, United States
- Father and Mother
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