Thursday, September 16, 2010

Our week in the North - August's recovery

Our stay up North was to be as long as one week. Dr. Roberson needed to see August for one post-op appointment before we could head home.
We had originally planned on driving to my cousins house after surgery was out and staying at her beautiful home in Clear Lake. But August simply was not up to a drive to any place but back to the hotel. Since we had not checked out, we decided to stay one more night and leave in the A.M.
After our long night of trying to keep August comfortable, we took our time leaving and checking out. We got on the road around 12:00. It was a nice drive for the most part. August got real car sick at one point and vomited all over himself. I figured it was the codeine in the Tylenol that he was taking all night. It has always made him sick in the past. It was a mess and he was crying. It was terrible. I felt so bad for the little guy.
Once we got things cleaned up, we were on the road again. We drove through wine country in Sonoma. It was a beautiful drive. As we moved on, August was feeling much better. Around 4pm, it was medicine time again and he refused to take the Tylenol. He said he didn't like it and it hurt his stomach.
I was concerned that he would be in pain and not be comfortable. So I called the doctor to see if there was anything we could do. They said it was great that he didn't want it and to just give him regular Tylenol if he was hurting. But when he complained of pain, he still wouldn't take anything, not even the regular Tylenol. For approximately 24 hours he had no pain medicine.
We arrived around 5pm after grabbing groceries and driving 4 hours to our destination. It was the perfect place for August to recover. It was the most beautiful spot we could have asked for at this time. The house sat right on the Lake. We had a deck with a walkway to their boat dock. August and Anders fished the entire weekend. August was in his glory. He was so happy that he totally forgot about his surgery and all the pain that he was having. We devoted all our time and attention to him. We played games, went for walks, caught lizards, fed the baby ducks and their mommies, and more, we all had so much fun.
He would complain only at night when it was time to relax. He did end up finally taking some regular Tylenol at times. But for the most part he didn't mention pain for the days we were in Clear Lake. (May 28th - 31st)
May 31st - We packed up and left the beautiful home in Clear Lake. We checked back in to the hotel that we stayed at earlier. It was our hope that August's post-op, on June 1st, would go great and we would be on our way home.
June 1st - We woke early, had breakfast, and checked out of the hotel. We met with Dr. Roberson's assistant doctor, Dr. Service. The exam went well. He cut the stitch out of the skin graph and said it would eventually fall off on its own. He also trimmed some of the round gauze that is inside the canal. We were given instructions to give August's ear doctor that would be doing the follow up back home. Everything looked good so far and we were set to leave for home.
We headed straight out for LA. We made it home around 8pm. As we were getting off the freeway, August's said, "we are HOME!" He asked, "do I have to go back to school today?" When I said "no baby," "we have to wait for your ear to heal for a bit." He replied, "thank you Mommy and Daddy for fixing my ear." I almost cried. We couldn't be more proud of our brave little man.

Saturday, August 14, 2010

May 26th and 27th - pre surgery and day of surgery

Wednesday May 26, 2010 5:06am, we depart from home to Palo Alto. It was a long drive with August asking tons of questions about where and why we were going far from home. He was a trouper from start to finish.
We arrived at 12:30 in the afternoon. August had a pre-op appointment with Dr. Roberson at 2:50 so we checked in to our hotel and took a little nap. At 2:50 we checked in for the doctor appointment. He first had a hearing test to see what the inner ear was up to on the Atresia side. August has always been told that his cochlear worked. We have never known if his small ear bones and middle ear were in tact. This test basically told us what we had already knew but it was needed prior to surgery. We were just happy that it was not bad news and his inner ear had not lost functionality. We then met with Dr. Roberson to go over all surgery procedures and what to expect, etc. August was a bit nervous. He didn't want to do the hearing test at first. He gave us a bit of trouble but with a little M&M persuasion we finally got the test completed. The doctor promised him he would not feel any shots so he was happy. He asked him, "are you ready for me to fix your ear?" August said, yep! And we were ready to go.

May 27th 6:30am, we were up and off to the hospital for surgery. We check in and wait for about a half hour before the nurse took us back to get prepped. Once we were in the pre-op room, August got nervous and wanted to go home. He told us he didn't want to change his ear and he walked out of the room. "Bye," he said. Anders went out to talk to him and he reluctantly came back but wouldn't let the nurse or anesthesiologist touch him. So they asked if they could give him a little medicine to calm him. We said okay and boy was that a change. He was a totally different kid. We had to film it because we had never seen our son so cooperative and calm. He was very tipsy. The doctor told us it was like he had just drank three margaritas. He was now letting the doctors and nurses do what they needed to get him ready. It was a bit easier for us to see him taken away for surgery. He would not remember anything after taking this medicine. Although, I must have cried for an hour after he left us. I knew he was in good hands but it was still hard to see him leave us. Many people were praying for him as well so that was comforting too. It was a long two and a half hours of waiting but when they called us in to see our little man I was relieved. There he was asleep and looking so well. He was as handsome as ever. He slept for about another hour. When he woke up he was not a happy camper. The anesthesia made him nauseated and grumpy. All he wanted was Mommy. So I held him on my lap and he fell back to sleep for about another hour. Actually we all did, Daddy, August and Me. When we woke up he moved to Daddy's lap and then the doctor came in to tell us how things went.
The surgery was a total success. August had everything he needed to hear at a normal hearing range now that this surgery had been completed. The only thing that was created in surgery was his ear drum. Doctor Roberson said he would never hear perfect but had an incredible chance to hear at normal hearing range. That was the best news we had heard in a long time. He was expected to heal like he should and proceed with the next surgery in August.
We were discharged from the hospital around 1:30. August was a bit slow, tired and nauseated for a few hours but he did very well. We got him some soup but he wasn't interested in eating. It was about 10pm when he decided he was hungry and he requested rice cereal (rice crispy cereal) his favorite. So that is what he got. He was given Tylenol with codeine so he was very groggy. It was taken every 4-6 hours for pain. He slept on and off that first night. It was a long day and night but we all made it.
The photo here was taken the day after surgery. The white gauze like square is stitched on to cover and help heal the skin graph. The graph was used for the hole that was made. It helps keep the bone from trying to completely close the hole that was just created. There is a sponge in the hole. That is the round circle that you see in the hole. All the skin that is left from the "S" shaped ear that was there prior to surgery will be used in surgery to, microtia repair. This surgery they cut the top of the "S" shaped skin and saved it under his skin. You can see a bump just behind the very bottom of the thick skin, somewhat near the ball. That is were the tissue is hidden. It will be taken out and used to make the new ear for August. His body will preserve it until surgery August 31st.

Monday, May 24, 2010

Getting ready for surgery day.

Well, it is days before surgery now. We are preparing to make our long journey to northern California. August has some idea what is going on in the next couple days. It is so hard to tell what he understands and what he doesnt. We have talked to him about it many times now. We have read him books on surgery and getting a new ear. He says he wants to have the doctors fix his ear but then the next minute he wants us to leave it like it is. It is really confusing for him, I think.

As for me, I am a mess. I am worried for my little man. I just want him to be better than before he went in for this surgery. I want him to be happy that we decided to have this surgery done for him at his age. I want him to ear and have two ears like all his loved ones and friends. I am worried that he will be okay while under the doctors care. I am just worried, like every mom would be. But I know my little man is strong and a fighter so he will be okay. He has to be! He is my baby.

We are leaving Wednesday May 26th at 4:30 in the morning. We will have a pre-op appointment at 2:50 that same day. Surgery is at 6:00 am Thursday May 27th. We will be staying close to the hospital for one week following the surgery for his post-op appointment Tuesday June 1st. Returning Wednesday June 2nd.

We have been praying every night for this surgery to be successful. I know he is in good hands. If I could ask for one more favor, please keep August in your prays. We will keep you all informed on his progress.

Thank you again for all your support!

Party Facts for April 24th.

April 24th was a very successful day for our little man. He got his bouncer, a pinata, lots of yummy food and everyone he loves to enjoy it with him. We started around 12 noon and went until about 7pm. He was exhausted by the time he was in his pj's.
Thanks to everyone that attended. We are honored to have you with us to celebrate. Thanks to all my family that helped with the food and getting things for the pinata. We missed those of you that could not make it. Hopefully we can all get together some time this summer.
Most importantly Anders and I would like to thank all of you that gave to August's gift of hearing. Your gift will last August a life time. Everyone brought tears to our eyes. It is so wonderful to know that so many of our friends and family care about our little man and want to help him. We are speechless and cant say thank you enough.
Thank you;
Melisa Venglass and family
Andrea and Mike Kelly
O'Brien Family
Mr. and Mrs. O'Reilly
Rachel Weissberg
Grandma Lucy (Nana)
James Barro
Connie Chestnut and family
Jessica Kendar and family
Vicky Bruce
Dena David
Mike Parra
Steve, Lilia and family
Tomas Viska
Forsting family
Ellsworth family
Zelda, Rick and Erik
Chavez family
Tommy and Alice
Hana and family
Moni and Ryry
Grandpa Dick
Walker family
Bill and Tricia Jackson
Uncle Adrian and Aunt Laura
Uncle Aaron
Mr. and Mrs. Hake
Cynthia Ramirez

We love you all and send our blessings.

Saturday, March 6, 2010

The Gift of Hearing (Donations)

For August's third birthday, please help us give him the gift of hearing in his Atresia ear. We have asked not to bring gifts to his celebration so that any dollar spent for a toy would instead go towards his surgery. This will be a gift August will be sure to enjoy his entire life...........

Donations for August's Atresia Repair can be given by Paypal, bank deposit or check. All donations will be deposited into a bank account created specifically for August's Atresia repair surgery.

Please be aware that Paypal charges 30 cents + 2.9% fee per transaction.
For example: A donation of $20.00 would give August $19.12 towards his surgery (a fee of 88 cents would go to Paypal).


To donate by deposit, please use August's Atresia repair special bank account information:
Routing # 322271627 - Account # 2953218019


To donate by check, please make payable to August Lind and mail to
August Lind
6212 E Carita St
Long Beach, CA 90808

All donations are anonymous, and any donation however small would be gratefully appreciated.

August will be forever grateful to anyone contributing to making this surgery possible.

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.

Wednesday, January 27, 2010

Final Days with John Tracy

We also learned about a hearing device called a BAHA. It is a bone conductor hearing aid for children like August. It is like a hammer hammering on the skull so the bone can transport the sound to the cochlear (normally the canal and eardrum do this). It is a very small box which is placed on a band like a headband. We wanted to get one for August so he could get his cochlear (inner ear) exercised and used. It just made sense to use the cochlear since it is functioning. I didnt want his brain to forget that it was there. However, our insurance would only pay for some of it so we didnt want to purchase one unless it made sense.
Was August going to want to use it? He had become a very independent little man and determined to get is way. He knew what he had. He understood that his ear wasnt the same as the other one. But still would he wear this BAHA. JTC allowed us to borrow one for six months so we could make a choice to purchase one or not.
We got it the day after his second birthday. I was so excited! This meant that August would be able to hear with both ears while using this hearing aid. It was so perfect.
Well, not so much for August. He was not so excited. We tried every tactic we could think of the get him to use it. But he wouldnt have it. I am not sure if it was because he had this headband around his head or maybe because sounds were clear and it was strange for him. He would hide his Atresia ear with his hand as if he didnt want to have the sound. It was a battle. But when he would use it, it was so amazing. He would hear things that he couldn't usually hear, things far away etc. It was great to see his response to sounds.
It was important to give the BAHA a try. Had August had the opportunity to try it as an infant, he would have been okay with it as he grew older.
After about four months of trying we gave the BAHA back to JTC.
While struggling to get August to use the BAHA, his good ear was progressing. His hearing tests just kept getting better and better. To us he was hearing like any normal child with two ears. Not to mention he was maturing like any other child as well.
A love for baseball, golf, race cars, trains, Elmo, Nemo, etc. He amazed so many people with all his passions. The ear was not slowing him down, not one bit!
Since August was finally doing so well with his speech and development and he kept showing no signs of being behind in any way, we stopped our visits at JTC. It was best to let another child, that needed JTC, be in our place. So we discontinued out visits when we gave the BAHA back.

Sunday, January 17, 2010

Our journey continues

On June 2, 2008 we brought our family to live in America. August was now sixteen months old. It was time for some real hard core studies of atresia microtia.
I started calling any affiliation to the deaf and hard of hearing. At this point, I was sure that August only had hearing in the left ear and there was only hope of ear reconstruction to the right ear. We did not know any other family with children that had atresia microtia. We had no mentors or guides to help us get more answers so I started just dialing and Googling everything possible.
At some point in July, I was given a group to contact called GLAD, the Greater Los Angeles for the Deaf. I spoke to a gentleman who finally understood that I was a mother looking for answers for my son.
I had called numbers of ENT's and the staff had no idea what atresia microtia even was. I didn't want to take my son to a doctors office that didn't understand what we were there for.
So you must understand how happy I was when I finally had someone that knew what atresia microtia was and that I needed answers. He soon had me connected to other families with children whom are deaf and/or hard of hearing. I was invited to private gatherings with these families to get familiar with others in the same boat. I had a phone conversation with a few and met with others.
But it wasn't until I met two beautiful ladies in Venice Beach one summer afternoon. August and I spent a few hours walking and talking with Jessica and Maddy. It was a turning point in our lives. Beautiful little Maddy was also born with atresia microtia and her mother was searching for answers as well.
As we comforted one another of our little gifts from God, we shared everything that we knew about atresia microtia. Jessica told me about the John Tracy Clinic and House Ear Institute. I shared with her about Early Start and programs that were available to help with early intervention.
But for me the turning point in my life was getting a call back from John Tracy Clinic telling me that they would give August an audiogram right away. They gave us a consultation and many connections to institutions to help us make the right decision for August.
At nineteen months old, we still had no idea if August had a working cochlea or not in the right ear. We still considered him to be deaf in that ear. So you could only imagine the flow of tears from my eyes when I witnessed my son for the first time respond to a hearing test on the atresia ear. Thank you John Tracy clinic!
The test showed that August's inner ear, the cochlea, was fully functioning. The issue was that he could not get sound through all the bone that was in the way of what should be his canal.
He could hear! He could hear! He actually could hear in that ear without a canal but things had to be extremely loud to get through the bones. It was the best day since August was born so far.
We were set up to meet with a speech therapist at John Tracy Clinic to help him get caught up. I was asked to attend meetings as well at JTC to meet with other families like ours and learn more about the deaf and hard of hearing.
What JTC did for our family is priceless. I was able to get all my tears and fears out and get more comfortable with what was to come for our August. They finally gave us the answer we had been waiting for on August's hearing ability.
For almost a year I stayed involved with JTC. August progressed in speech with the help of Mary at JTC. Everyone at JTC helped me understand and be comfortable with what we were dealing with in having a child with atresia microtia. They even gave us a BAHA (Bone Anchored Hearing Aid) to borrow for August. Which was something I thought was important to try before we spent tons of money on for nothing. Thank you JTC for your help, love, concern and support. Thanks to all the families I met at JTC. You too helped me heal and understand.

In our journey to reconstruct August's ear

We learned that the ears are developed in the first trimester of pregnancy along with the kidneys. So it was important to rule out any issues with August's kidney's as well. He had an ultrasound at UCLA during our visit to the US in 2007.
We also had x-rays of this spine and neck. To make sure that his bones were strong enough to hold his head. In some cases the neck vertebrae and skull/jaw are mis-formed as well.
He checked out perfect on both. Thank God!
We learned of the test called ABR which can determine if the cochlea in the Atresia ear worked or not. (The inner ear or snail part of the ear.)
We were so excited to learn that there was a test that could determine if the deformed ear was a hearing ear or not. It was a relief to know that he might actually be able to hear in that ear. The hard part was to wait until we were back in America to have more answers.
We continued having August's check up on this normal ear every six months. He continued to show a perfectly good hearing left ear. He was growing and maturing like a normal little boy. We were so pleased with his progress.
Just two weeks shy of his first birthday, August took his first steps. He showed no sign of being off balance.
He showed a love for balls as early as 9 months old. He would grab our fingers and want us to walk him around as he kicked the ball all over our small flat. Today he still has a scar above his left eye from trying to stand on a ball and hold himself up by our coffee table, he was only 10 months old. He hadn't even taken his first steps alone yet. A determined little guy.
He took a love for drums at an early age as well. This was a surprise to most since his sound of hearing was distorted from only having one good hearing ear. When he saw a drum set, his arms and legs went crazy. He barely sat up on his own but he wanted to hit the drums and listen to someone play them.
There was just one thing that kept me worried as August grew older. His speech was not coming in as most children's did at his age. As time went on we just kept speaking to him as if he had normal hearing in hopes that he would just start talking like normal.
In some cases I was feeling like I was just waiting for time to pass until we got back to my country to get the answers we needed. There was still so much to learn.

Research continues

When we returned home to Denmark, I continued to look for answers. We learned from the cranial facial team, August could have ear repair surgery using tissue from his ribs. However, it could not be done until he was 8 or older. Some even suggested to wait until he was approximately 12-13. The surgery would require the surgeon to take cartilage from his ribs to form an ear.
We did not learn too much about the atresia repair. So I wanted to be more informed on that procedure. I also wanted options were the microtia was concerned. Using cartilage was not so exciting to me.
I did a Google search on atresia microtia and found out so much information and that there was help for our son.
Unfortunately, the Danish doctors, told us that they did not have the technology to do the tests that we were told about. It was just best to wait until he was old enough to make decisions on his own, around 18 years of age.
In my research, I found that children with unilateral (one-sided) hearing loss are usually held back in school and suffer in school due to the inability to hear everything the teacher is saying. Especially if he did not get preferred seating to have his good ear to the teacher when at a chalk board, etc.
I also found that many children with atresia microtia can suffer from lesser self confidence and become introverted while in school. Their self esteem is lost due to trying to hide the ear and/or other children giving them a hard time about their appearance, etc.
So I knew that this was not something we could wait on to be fixed until age 18. All his school years would be over and I was not going to take the chance of his studies and self confidence being altered because of his ear.
More things I found out was;
- This is more common in boys than girls
- Averages occurrence is 1 in 6,000 when averaged across all ethnic groups
- 60% of these cases are of the right side and unilateral only (one side not both)
- Atresia can be a symptom of a larger syndrome, such as Treacher Collins,
Crouzon's, Alpert's, Preiffer, Klippel-Feil, BOR (Branchio-Oto-Renal), 18-q
chromosome as well as Hemifacial Microsomia.
- The rib graft surgery would be at least 2-4 surgeries before he would be free of
surgery for a while. (this does not include the microtia repair)
- The costs involved for both surgeries would be approximately $65,000.00
We were lucky that we were only dealing with atresia microtia and not any other symptom. However, the more I learned about the rib graft surgery, I was wanting to find another option.
I was not pleased about putting him through 2-4 surgeries just to reconstruct his ear, knowing he would still need another major surgery on the atresia repair. So I continued my research.

Saturday, January 16, 2010

The search for answers

August was born in Denmark, his daddy's native country. With me being American and not understanding enough of the Danish language, it was extremely difficult to understand what the doctors were telling us most of the time. My husband would translate as much as possible but with all the medical terms that were used it was not so easy to translate.
We were set up with a Danish ENT doctor whom explained as best he could in English. We did learn however, that the deformity was called Atresia Microtia. Atresia means, malformation of the external ear and most of the time the middle ear as well. Microtia, is Latin for small ear.
But again we were told that there was nothing we could do at this time. He was too little to have a hearing test to that ear and it was a bad idea to do anything until he was at least eighteen years old. He was to have a normal life growing up with just one ear. I should not be worried a bit.
I was still not pleased with that answer. I was determined, as his mother, to know as much information as I could about what we were dealing with. He was not going to be lost in the system and not get every opportunity he deserved.
So I continued my research on websites. I spoke to ENT's in the US and finally got in touch with a cranial facial team at UCLA.
On our visit to America, when August was just three months,UCLA was gracious enough to squeeze us in with short notice. August was be evaluated by the entire facial team. The panel of doctors explained in detail surgery options and hearing tests.
We met with oral surgeons, cosmetic surgeons, atresia repair surgeons, etc. We were told August could be a candidate for repairing the outer ear at the age of eight. He could also have atresia repair but he would have to wait to find out until he was about two and a half. He could undergo a CT scan that would determine the likelihood of him being able to hear or not, if the bones and facial nerve would or would not interfere with a canal surgery and if the middle bones were intact.
Since we were on a short visit of only four weeks to America, we had no time to run a hearing test in the microtia ear. So we would have to wait until our return to America on a later date. A hearing test would help us understand the depth of hearing August already had even without the canal.

August early days of life

When a child is born as parents you expect a perfect little bundle. The bundle should have two hands, two legs with two feet, all five fingers and toes, two functioning eyes and ears, etc, etc. You are never prepared for any of these things to be wrong or missing.
When our little August was born we were expecting the same as all parents. He was born pre-mature but a healthy pre-mature weighing in at 5.6 pounds. He was ready to conquer the world at 34.4 weeks in the oven. He spent about three days in ICU and another two weeks in the hospital with me, his mommy. We were ready to move on and go home and get started with our new lives as a family.
But I will never forget the words that came out of my husbands mouth as the midwife placed him on my belly with his right side facing up. "Wow, he has a very small ear!" My reply was, "is there something wrong!" I couldn't see him in the same angle as my husband. I could only feel and it seemed not right to me.
While my husband and the doctor took our new baby boy to be taken away to be cleaned up and get warm, I was left alone to wonder if everything was okay.
After what felt like hours, which was truly about one hour, my husband came to take me to see our little guy. But before we left, he said, "he is so perfect and beautiful but there is something wrong." I felt my stomach turn as he said the words. He advised me that his right ear never formed on the outside. He did not know if he could hear or not from that side or what it meant. He just didn't have an ear on the right side. I didn't know what to think or feel. It just didn't make sense. I was sure that it was just something simple and we could fix it for him right away.
When I was finally joined with little August, he brought tears of joy to my eyes. He was the best thing I had ever laid eyes on. He was so beautiful just as my husband had said. But yes, he was missing his right ear and it too brought me to tears. I wanted answers now! Did I cause this to happen, was I already a bad mother and he hadn't even been in this world more than an hour or so. I was so devastated.
I can remember thinking, how he would get teased at school, will he be able to walk with the right balance, will he get his speech when he is supposed to, tons of things came to mind. So much worry! I just wanted answers!
We had a tough start with August, aside from his ear. He had pyloric stenosis and had surgery at three weeks old. He then developed a bad case of acid reflux until he was nine months old. We never slept. He couldn't sleep because lying down made him vomit and he would choke. It was very exhausting for all of us for about the first 4-5 months.
With all this going on it was hard to find time to research the small ear that August had. We were told that he did not have hearing in the ear while at the hospital for the two weeks after birth. We were also told that he did have perfect hearing in the left ear. With that, we were not to worry since he could at least hear from one ear.
I was not satisfied with that answer. I was determined to find out what this small ear was all about.