Voices of Courage

Letters from Children and Adults Who Have Already Had Surgery

I thought it would be a nice touch for other children who have already experienced surgery (from ear reconstruction through Rib Graft/Medpor/Soft Tissue to Canalplasty to having an implantable hearing aid. These children can be the voices of courage for the rest of our children. Just tell a little bit about your surgery and what you experienced.
Thanks so much.
Melissa

A Letter From Daniel:

This letter was submitted by Dr. Bonilla’s office on January 25, 2011. I have been granted permission to post the following letter from Dr. Bonilla.

1/25/11

Dear Dr. Bonilla,
You did a spectacular job on my ear. Thank you for being so great at what you do. I am so excited for the next surgery. This is a life changing experience. Thanks again for all the hard work.

Sincerely,
Daniel (Melanie Mendoza’s son)

A Letter From Emma:

Hi everyone,
This is Emma. I was little scared at first but then I was not anymore. I was strong and brave after I prayed. You will be strong and brave too. After the surgeries it didn’t hurt me, only some itching. So don’t be scared!!Surgeries are not scary because we have great doctors. Doctor Reinisch and Doctor Roberson know how to open and make beautiful ears. They made gorgeous ear for me and I am very happy. Thank you my God and my doctors.

Emma Tran 🙂 (Sarinah Tran’s daughter)

A Letter From Alyssa:

The following letter of thanks was submitted to Dr. Thorne in 2004 by a little girl named Alyssa and her family. I have been granted permission to post this “thank you” letter by Dr. Thorne and his staff.

Dear Dr. Thorne,
We just wanted to take a few minutes to let you know how much we appreciated the incredible job you did on Alyssa’s ear. When we started this process last year, we could’ve only hoped that we’d find a physician as wonderful as you. We were putting our daughter’s safety in your hands, and as a fellow parent, you know how difficult that is to do. From the first time we met you, we knew (and more importantly Alyssa knew) that you were the right surgeon to perform this operation. Your caring nature and positive outlook gave us a comfort that we will never forget. You have a wonderful bedside manner along with great expertise in the field of plastic surgery. We will never forget the phone call you made to Alyssa the night before her first surgery. We were all nervous but that two minute phone call put us at ease and relieved the tension. The most important thing to us was that Alyssa felt safe with you, and it made her experience less frightening. Throughout both operations your dedication and care never wavered. As the final results are evident, we knew we made the right decision going a head with the reconstructive surgery. Alyssa has a new confidence now partly due to the excitement she gets when she looks in the mirror.

Please thank your entire staff for their professionalism and caring nature. Again, thank you so much for your expertise!! We find it truly amazing that in less than a year, Alyssa has been able to show off her new ear and doesn’t have to hide it like she had been doing for the past 19 years!

Sincerely,
A + B N

A Letter From Marc:

The following letter of thanks was submitted to Dr. Thorne by a little boy named Marc and his family. I have been granted permission to post this “thank you” letter by Dr. Thorne and his staff.

Dear Dr. Thorne and Staff,
We are so grateful for all of your support this past year during all of Marc’s surgeries. You were always so helpful and patient during the reoccurring insurance difficulties, and my numerous “anxious parent” phone calls.

Marc has a beautiful result, which he enjoys showing off. He insists on wearing his hair slicked back. He has a hand mirror, which he uses with his large wall mirror to get a good view from the side. I see the hand mirror out, which indicates that he spends time admiring in private. I have since spoken to several parents of children looking for future reconstruction. My pediatric group and local hospital give my name to families with newborns with Microtia.

We thought Dr. Thorne did an unbelievable job. Many people have asked to check out the reconstructed ear, and they turn to look at his “normal” side, thinking the reconstructed was natural. We also thank Dr. Thorne for his professional and compassionate attitude. Marc was very silly and anxious at various times, and Dr. Thorne never became impatient or gruff. We sincerely felt as if we had the best possible care taker for our son. We wholeheartedly recommend Dr. Thorne. We were recently at the Copacabana with Forward Face, and spoke to several families. They were also impressed by how great Marc’s ear is.

I am sending you a picture of Marc to see how natural it looks. When we get a good side view, I will send to you. I know you have pictures, but it keeps looking better as it heals and the color becomes more even.

We would like to wish all of you a healthy and peaceful holiday season shared with those that you love.
And, as Marc has been saying at home, Happy New Ear!

With our appreciation for all that you did.
Marc and Family

A Letter From Nicole:

Hi All,
My daughter Nicole just wrote this letter for anyone having surgery:
Hi, my name is Nicole and I just had my stage 1 rib graft reconstruction done by Dr. Thorne on 1/11/11. If you are having surgery, don’t be nervous! Well, of course you will be nervous like I was! But, everything turned out great. Also don’t worry cause ypur parents will be with you from the beginning to end. You should know that you will still be nervous, I think everyone is. Just remember even if you are wish you did not have the surgery when you are in the hospital once you get back home to normal you will love your new big ear. Once I get my stage 2 I’ll tell you all about it too.

From, Nicole (Ginny Wallace Tague’s daughter)

A Letter From Robyn:

Hi Everyone,

I’m not a child.. But I’d like to write a letter, if that’s ok. Because I recently went through Microtia surgery.
I know surgery might seem scary, believe me. When I was little the operations I had on my ear used to make me cry and worry. But believe me, it really is worth it. Now I’m a grown-up, and I’ve had more operations, I know they’re not scary any more. The doctors are amazing people, and they will really look after you and make sure nothing bad happens. And even though it hurts when you wake up, that won’t last, and you’ll have a brand new big ear to be proud off. It’s normal to be scared, but you’ll have your family and doctors there to help you through it. I hope this helps you feel even a little bit better.
All the best, from Robyn Laura Brown

A Letter From Bethan:

Before I begin writing about why I decided to have my surgery and my experience I firstly want to thank Melissa for recommending me to write this letter as it is an absolute honor for me as I personally love writing and what better than to help people of all ages who also have Microtia 🙂

I actually had my first operations when I was 4 months old but that was for something totally different. I had my first ear operation when i was probably around 2-3 years old as I had extra cartilage growing which shouldn’t have been I have had various other operations as I have other conditions as well as Microtia but anyway I know from hearing my mum talking about it that when she went for one of her scans that a little chip which wasn’t me was spotted floating around in her womb so she was sent to the university college of London for further scans as it was believed I had brain damage or mental illnesses as well as a few other things which is how my story actually begun my mum was constantly offered abortions up until she hit 23 weeks I believe which she was horrified to have found out that you can still abort a baby once its almost /is fully grown luckily she actually decided to keep me so both my parents were referred to Great Ormond Street Children’s Hospital , London where various tests and scans were sent off they didn’t know I had Microtia until i was born.

I never thought myself different to anyone else and didn’t notice anything different about my ear as this was the way I had always been and to me this was normal so I thought nothing of it and I didn’t realize I was in any way different until I began Junior school this was when I really realized something wasn’t right about me or that i was different and i didn’t look like anyone else I knew or that was in my school.

On the very first day of year 3 I started getting comments from my class mates almost instantly about my ear things such as what was wrong with it , why did i have a funny ear ,why was it different, had it been squashed something i had no idea about from that day onwards i was bullied by the other pupils it didn’t matter how often my parents went up to the school the schools head would always turn around and say their was no bullying in her school (basically suggesting I had made it up myself) i never wanted to go into school due to the bullying so the only way of getting out of school that i knew of was to fake being ill but however when your doing this on a daily basis eventually you get sent to school by your parents who would have to force me in as I wouldn’t go in because I wouldn’t and couldn’t bare to face all of the comments not only from my class mates but pretty much the whole school at this point even people I still to this day have no clue who they are or were the worse part of this bullying was not only that it was a daily thing I had to face but I was actually unable to tell my parents everything that had happened or had been said because of how much it hurt me but also their was staff who witnessed the bullying and stood their and didn’t do a thing to stop it it actually made things harder than they needed to be as it meant I was unable to make or keep friends but i did eventually make one friend who I am still extremely close with but the bullies then ganged up on her as well making nasty remarks about her wanting to be my friend so I actually decided it would be best if of a lunch time I hung around one of the dinner ladies who did actually stop the bullying plus the bullies wouldn’t go anywhere near me. Eventually due to all of the troubles i was having i moved school which was in year 5 because every day the bullying would get worse.

The new school seemed perfect everyone seemed to be really nice friendly people and I didn’t once think anything about getting bullied because I was free from it as far as i was concerned anyway more problems occurred with my previous school not sending over files and things but things were fine now I had a party for my birthday everything seemed fine until year 6 where one girl in my class ended up turning the whole class against me and flushing my entire PE kit down the toilet and was excluding me from any activities that she was doing that I also wanted to join in but this time the bullying did get resolved and she was told she was not to come within a certain distance to me or make any more comments to me and if she did she would be kicked out.

Towards the end of my last year in junior school I went for an appointment with my Consultant and surgeon Neil Bulstrode at Great Ormond Street Childrens Hospital , London and I remember him doing all of the usual looking at my ear and looking at my other ear which had not been affected and I remember I was given three choices on that day the:
1st : to leave my right ear how it was

2nd : to have a prosthesis ear which would be attached to the side of my head with magnets or clips

3rd : to have rib cartilage graft reconstruction surgery

I was then told to think it over as to what I would like to have done to my ear and have time to get my head around the different options but I decided fairly soon on I was definitely not leaving my ear how it was then I decided I wouldnt want an ear that I could take off and on as knowing me I would have lost it plus I didn’t like the idea of loosing my what I called little ear so I decided on the rib reconstruction graft operation which was two stages long and would create a new ear using cartilage from my ribs and my little flap of skin (right ear).

I had the first stage to the surgery done in the summer of 2006 I must admit I was a bit scared not of the operation but of what would happen with bullies would I be bullied more for appearing to have given into the bullies the first stage was most definitely the worst part of the whole thing as this was when the cartilage was taken from my ribs I think I was in theatre for around 6- 8 hours or something similar to this I was in hospital for a week I was in a fair bit of pain in the rib area which did make it hard for me to get out of bed and walk around but within around 3- 4 days or so I was back on my feet and felt ready to walk around due to it begin the summer and having a thick bandage around my head it did make my head pretty hot and itchy but the thing I remember quite clearly was that of a night because I was wired up to various machines and monitors I even had drips and things coming out of my neck and head according to my mum it was rather hard to find a comfortable position to sleep in as every time I moved I would set one of the machines off or a nurse would come in but as the days past more and more of the machines were quickly disappearing making it look more like a bedroom. After a week in hospital, I then went home for a weeks recovery before returning to school however I was unable to do PE for 3 months in case I got knocked in the ribs or my ear got hit which was fine by me as I hated sports and PE.

I had the second stage to the operation done in 2007 which was my first year in secondary school this one was nothing compared to the first stage and to be honest I wasn’st in pain at all and this time I was up and moving around within an hour and this time it was only an over night stay at Great Ormond Street Children’s Hospital ,London again I had a week of recovery at home and another 3 months off of PE and sport this time I didn’t have ay machines bleeping although their were some others going off on the ward.

Both times I was honestly dreading returning to school as i had been away for two weeks each time but to be honest it was no where near as bad I had someone who came to get me 5 minutes before a lesson finished so I could avoid the rush and so I didn’t get knocked and both my junior school and secondary school were very supportive and made me feel as comfortable as possible when i returned to school. I would personally do it all over again it might not feel that way at the time but when you look back on it and you get to see the end result it really is worth it and I’m really glad that I went through with it.

There is nothing to be scared or worried about although sometimes it is said to be a good thing but my advise would be that if you are worried or nervous to ask as many questions as you can either to your parent , teacher , guardian , consultant or your surgeon and don’t feel that you are alone as their is other people out their going through the same thing also don’t panic and remain calm try to listen to music or take things along to the hospital to entertain yourself some times reading other peoples stories and having a little research into the procedure your having done can help and just remember what ever you decide to do whether you want your ear(s) operated on or not their will be people such as your parents supporting you every step of the way just do what feels right for you.

I personally would like to thank my consultant and surgeon Neil bulstrode , Gaynor Osman who must admit she was my fave nurse and my friends , family , family friends and of course my parents for beign their for me every step of the way.

If you want any more information please don’t hesitate to ask I am happy to answer anything you want to know I also have written a story of it on Great Ormond Streets teens first for health : http://www.gosh.nhs.uk/teenagers/real-stories/

But, yeah any other info you need or anything else you want to know I am happy to answer I hope this helps even if it is the smallest little bit.
All the best, from Bethan May Harvey x

Science gives little girl ears she was born without

Article:  Groundbreaking procedure means music to 5-year-old’s new ears

Tuesday, May 01, 2012, 12:28pm
(NECN/KNTV: Kris Sanchez) – When talking about Silicon Valley innovation, tech usually comes to mind. But many groundbreaking and life-changing procedures are pioneered there, too, and for one little girl that is music to her new ears.
 “Bilateral Microtia with Atresia doesn’t show up on ultrasound so until they handed her to us we didn’t know that she’d be born without ears,” Jamie Guerrette said.  Bobbi Guerrette, 5, was born with a condition in which her ear canal and outer ears never developed. Instead, there is solid bone between where her ears should’ve been and her inner ear.   At that time, doctors told Bobbi’s parents she’d never hear and thus would never learn to speak. But her parents refused to accept that diagnosis.  They instead found the California Ear Institute.

Three years ago, doctors pioneered a surgery to construct the ear canal and build the outer ear in just one 10 hour out-patient surgery.  “They do it in the morning and we’re sent back to the hotel at night. The fact that it could be done quickly was the best option for us,” Jaime, Bobbi’s mother, said.  “Psychologically for a child, it’s wonderful to get it done one time. Four or five times to the operating room is a lot to deal with in your first few years of life. So I like that part of it. But the safety and outcome are more important to me than that,” Otologist Dr. Joe Robertson said.  For Bobbi, the outcome is nearly perfect. Bobbi’s new ears are built of a kind of surgical plastic and her own skin. Soon, she’ll ditch this hearing aid and she’s already wearing sunglasses and even got her ears pierced!

“When you look at the ear from afar, even a few feet away. If you look closer, you’ll see some scars but most people never pick that up,” Dr. Robertson said.  “My teacher didn’t know …no,” Bobbi said.  Soon, Bobbi will return home to Maine. Her mom says what she’ll remember about California is Disneyland and a fountain outside the California ear institute – not the surgery that made her whole.  “She’ll look back and see pictures, but for the most part, she doesn’t remember not having an ear,” Jaime said. 

That is exactly what her doctors were hoping for.

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