Wednesday, February 10, 2010

Sunday, February 7, 2010


So as August turns three, February 2, 2010, he is old enough to have his surgery. This will be a big year for our family. A year we will remember forever. We will give August the gift of hearing in his right ear.
August is scheduled for atresia repair surgery on May 27th, 2010. He is also scheduled for microtia repair on August 31st, 2010.
We have not completely explained it to August yet but when the time is right we will do our best. As for me, I am still nervous but grateful this surgery is available to August and the success is so high. I will be worried, but I know this is the best thing we can give to him right now.
We will travel to Palo Alto for his first surgery and stay there for a week. He will have surgery and then need to stay close to Palo Alto in case of any complications. A week after surgery August will have a check-up to determine if we can go home. At that point we will start the healing process at home for about a month or two.
There is a full three months time that needs to pass between surgeries, so that is why there is a three month wait until the microtia repair. When the microtia surgery time comes we will take August to Cedars Hospital in LA. Again we will go home and have about a month or more of recovery.
He will continue for the rest of his life to see an ear specialists to determine his hearing prognosis.
As we go through this years experiences, we will keep you all informed on how things are going.

The BIG decision

Secretly, I was lost in my thoughts of what to do about our beautiful little man. I dont want to have him go through any surgery if he does not need it. So I was torn with having this good news.
August is so smart, healthy, athletic, busy, curious, loving, everything a little boy at his age should be. As his mother, I don't want anything to change: he needs to be who he is becoming. And if having either surgery does effect him negatively, I would feel to blame.
After pondering my thoughts for a while, I finally mentioned to my husband that I was having different thoughts of the surgery now. He was surprised but understood. He opened my eyes to all the reasons why we had done so much research in the first place.
And after asking August if he wanted the doctor to fix his ear to look like the other one and he said yes, I knew we needed to move forward.
I also started thinking about the man I met at the microtia repair doctors office. He was in his forty's and was just getting a microtia and atresia repair. He told me if he had the opportunity to fix his ear at August's age he would do it no questions asked.
So I followed up with both surgeons and scheduled an appointment for each surgery.

CT Scan

In August 2009, August was two and a half years old. It was finally time for our family to find out if August was a good candidate for atresia repair. He was finally old enough to have a CT scan.
In October 2009, August had his scan. It was very traumatic for him. Also for me. He was so frightened by all the machines in the room and people in hospital cloths. We ended up having to give him anesthesia to get the scan completed. I was crying because he was yelling and crying for me. It just broke my heart. But after ten minutes they came and grabbed us and he was just waking up. It was so quick and he was just fine. He was very nauseous for a while after but we made it through.
A few weeks later I got an email from Dr. Roberson's office letting us know that on a scale of 1-10 August was an eight and a half to a nine. Which meant he was a perfect candidate for atresia repair. It also meant the higher the grade (1-10) the more a chance of success. With this repair, the chance of him hearing in the atresia ear are high.
It was the best news I had heard in a long time. I had waited for two and a half years to know exactly what we were facing and now it was there in front of me. I sobbed for about fifteen minutes.
I was sobbing because I was so happy for our little man but also because I now know that he will undergo major surgery's very soon. The reality was right in front of me. I started questioning whether we really needed to get it done now or not. I started questioning if we were doing the right thing for our son. Maybe the doctors were right in Denmark. Maybe we do need to wait until he is eighteen. Or maybe at least until he wants it done. Or maybe he would just be fine his entire life with only one working ear. I was torn!

Monday, February 1, 2010

Information on Medpor and Rib Graft


Medpor is a more recent addition to the microtia reconstruction surgical arsenal. Medpor is porous polyethelene, basically, a piece of surgical plastic which replaces using the rib in the ear reconstruction process. Microtia reconstruction using Medpor can start much earlier than rib grafts (as early as age 3).

Using Medpor requires special training, and as of this writing, only two doctors (click here to go to list) in the United States are performing microtia reconstruction using Medpor as their primary plastic surgery specialties.

The advantages of this technique include:
2 surgical procedures instead of 4
No rib harvest
Better ear projection
Less concern about scar tissue present prior to surgery
since flap from scalp is used over the implant
Canalplasty/BAHA can be done prior to Medpor reconstruction
Reconstruction can be done at age 3-4 instead of 6-10

Rib Graft Reconstruction

Using an autologous rib graft transplant is the most widely accepted approach to microtia reconstruction. A piece of rib cartilage is removed from the person with microtia, formed into the shape of the ear cartilage that is missing, and then inserted under the skin around the ear. This cartilage serves as a framework for the new ear.

The advantages of this technique include:
no foreign materials, thus no risk of rejection
your own skin covers the new ear, no grafts or donor skin, again, no risk of rejection
Disadvantages of this technique include:
several surgeries (2-4) required for unilateral repair, bilateral microtia reconstruction using the rib graft technique generally requires a minimum of 5 procedures.
incision in the chest to remove cartilage
generally wait until age 6-7 before surgery can begin
Rib graft microtia reconstruction is a highly skilled subspecialty of plastic surgery. Do not believe any random plastic surgeon (even if board certified) who says they can perform this surgery. Ask for before and after pictures, patient references, and failure rates. There are only a handful of doctors (click here to go to list) in the world who perform rib graft microtia reconstruction as their only plastic surgeon specialty. It is always best to try and see one of these doctors, as they have the most experience, they generally have the best outcomes and the fewest failures.

Medpor Microtia Repair

During these past months of learning about Atresia Microtia, spending time with JTC, meeting wonderful family's with children with hard of hearing and/or deaf, I was still wanting more information on other possible procedures for repairing August's ear.
One afternoon I checked my mail to find that my grandmother had sent me an article about a child that had exactly the same thing as August. Our friend Lois also saved us the same article. It was about a boy that had Artresia Microtia but had repaired it with a doctor at Cedars Sinai Hospital by the name of Dr. Reinisch. However, it was not done with the rib graft. It was done with what is called Medpor. This will allow August to have less surgeries, have an ear that looks more like an ear, have it done earlier in age, and not need to use his ribs.
I was so excited to read about this little boy. I picked up the phone and made an appointment with Dr. Reinisch.
After our appointment, I was sold. I spent the next days explaining the procedure to my husband. So that he could get a better understanding we decided to muster up enough money to go to a conference that was being held by the California Ear Institute in Palo Alto.
Dr. Roberson is the doctor that started this foundation and is an Atresia repair doctor. He and Dr. Reinisch were speaking at this convention along with Dr. Brent a rib graft doctor. Dr Reinisch has teamed up with Dr. Roberson on many surgeries and studies of using Medpor.
The conference allowed us to learn about each option that we had to choose from. We had all our questions answered and got to meet with each doctor privately. It was a great trip to Palo Alto.
When we were finished we were sure of what we were going to do to get August his ear repair. There was no doubt in our minds.