Rare Birth Defects:Living with Hemifacial Microsomia, one family's experience.

A Special Child Is Born.

I remember the night before my son was born extremely well. I had been admitted to hospital for an induction and was so excited at the prospect of finally getting to meet this new life that I had carried around inside me for nine long months, I hardly slept at all.

By the time morning came and it was obvious to the doctors that he had no intention of coming out I was given an emergency cesarean. Shortly after he was born I was aware of the doctors talking about something being wrong with his ear and they called for a specialist to come and examine him.

No-one ever expects there to be anything wrong with their baby, that only happens to other people, right?

Hemifacial Microsomia Syndrome

13 years ago my much longed for precious baby son was born with hemifacial microsomia, a rare craniofacial syndrome that affects one side of the face. It happens very early on in the pregnancy and is thought to be caused by an interruption to the blood supply when the parts of your baby's face are being formed. It is sometimes referred to as first and second branchial arch syndrome.

Goldenhar syndrome is a similar condition although children with Goldenhar syndrome can often also have other symptoms, such as problems with their necks and benign growths of the eye.

The name hemifacial microsomia means one side of the face has a smaller body. Quite simply put one side of the face develops at a different rate to the other side. On the left side everything was perfect, on the right side he was missing almost all of an external ear (grade 3 microtia) had no ear canal or hearing (artresia), an extremely underdeveloped jaw (micrognathia) and some degree of facial paralysis.

After nine long days in hospital, and many visits by a ton of different specialists, doctors and social workers, we were finally allowed to go home.

A Time of Uncertainty

When your baby is born with a birth defect it can be a very frightening time. You're likely to feel a raft of different emotions, you might be scared, confused, sad, angry and possibly in shock. You're probably wondering how on earth this happened, was it something you did, what will happen now and how on earth are you going to cope?

That perfect life you had all planned out is suddenly turned completely upside down and nothing is ever quite the same again.

But, you will get through it.

Moving Forward

I have put this hub together in the hope that by sharing some of our own experiences we might be able to make the journey a little less daunting for someone else.

Here are a few basic things you can do to make life a little easier on you :)

Be Informed

Read, read and read some more. You know that old saying "knowledge is power?" It couldn't be more true in a situation like this, the more informed you are the less alone you will feel and the less fearful you will be. You will need to be strong for your child's sake.

Children with Facial Difference - A Parent's Guide

A Must Read Book - An Absolute Life Saver

The editorial review for this book simply states that "No parent of a child born with facial difference should be without this book."

"For me and for several other parents of children with facial differences, this book has become an essential handbook, in essence, to some of us, this book has become our "Bible." (as quoted on Amazon)

I bought this book when my son was about a year old. It was written by a woman who is a social worker and the mom of a child with Treacher Collins syndrome. It contains an absolute mine of information written in a way that's simple to understand.

It was in this book for instance that I discovered why I had such difficulty breastfeeding. It turns out that children with facial difference are almost always impossible to breastfeed as they are unable to suck properly.

Or that the definition of staring is simply the length of time it takes a person's brain to register that something is different.

It would have saved me an awful lot of pain and heartache if I had known this kind of information much earlier on.

Try Not To Look Too Far Ahead

In the early days it's hard not to spend hours agonizing over the "what if's" or looking at hundreds of photos of babies and children with craniofacial syndromes. You can really tie yourself up in knots doing this and at the end of the day it doesn't actually get you anywhere, everyone is different.

Ask for help

Surround yourself with friends and family and get all the help you can. When you're ready, reach out and find some people who know what you're going through. It doesn't have to be an official support group, just a couple of other families that you can share your experiences with is enormously helpful. Believe me you will have a hundred unanswered questions.

Look after you

Without a doubt one of the best things you can do is to be kind to yourself. This piece of prose was given to me when my son was just a few weeks old, and I found it to be of great comfort. I have since been able to pass it on to many other moms in similar situations to myself.

Whether you believe in God or not, doesn't seem to matter, the message is still the same, for one reason or another you were chosen to be this special child's special mother, rejoice and be proud of yourself!

The Choosing of Special Mothers

by Erma Bombeck

Somehow, I visualize God hovering over earth, selecting his instruments for propagation with great care, and instructing his angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Mathew." "Forest, Marjorie, daughter. Patron saint, Cecilia" "Rutledge, Carrie, twins. Patron saint...give her Gerard. He's quite used to profanity".

Finally, he passes a name to an angel and smiles," Give her a disabled child."

The angel is curious." Why this one,God? She's so happy."

"Exactly," smiles God." Could I give a disabled child a mother who doesn't know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has a sense of independence that's so rare and necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him/her live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you." God smiles." No matter, I can fix that. This one's perfect. She has just enough selfishness."

The angel gasps."Selfishness? Is that a virtue?"

God nods." If she can't separate herself from the child occasionally, she'll never survive. Yes, here's a woman whom I'll bless with a child less-than-perfect. She doesn't realize it yet, but she's to be envied.

"She'll never take for granted a spoken word. She'll never consider a step ordinary. When her child says "Mommy" for the first time, she'll witness a miracle-AND she'll know it. When she describes a tree or a sunset to her blind child, she'll see it as few people ever see my creations."

"I'll permit her to see clearly the other things I see - ignorance, cruelty, prejudice - and allow her to rise above them. And because she's always doing my work I'll be at her side every minute of every day."

"What about her patron saint?" asks the angel, his pen poised.

God smiles." A mirror will do."

Looking Good

Fast forward to present day and thanks to a team of truly gifted surgeons, my son now has an amazing external ear made from his very own rib cartilage. An operation at five years old to lengthen his jaw by a distraction process has given his face more symmetry. A bone anchored hearing aid (BAHA) attached at seven and an FM system along with his glasses means he is not disadvantaged in any way in the school classroom.

Not everyone feels that surgery is right for them and you must make your own decisions based on your child's specific needs. Even though the operations were long and complex and recovery was at times slow and painful, I'd still have to say, even after all the tears and worry and uncertainty, we definitely did the right thing.

Just Look At Me Now - 2009

After jaw distraction surgery and ear reconstruction surgery - six operations in total over a period of six years.
After jaw distraction surgery and ear reconstruction surgery - six operations in total over a period of six years. | Source

Update 2012

Almost 14 years old now and still looking good!
Almost 14 years old now and still looking good! | Source

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Comments 30 comments

2patricias profile image

2patricias 6 years ago from Sussex by the Sea

This is a lovely hub, very well written. I hope that at least one new mother of a child with unexpected issues find this, as I am sure it will be helpful.

jackie.t profile image

jackie.t 6 years ago Author

Thanks, yes that is my hope too. It's a scary place to be when things don't turn out the way you expected. It helps to know there are others who have been through what you are going through (although it is different for everyone).

minnow profile image

minnow 6 years ago from Seattle

you write very warmly about your subject, Jackie. great job! thumbs up!

jackie.t profile image

jackie.t 6 years ago Author

Thanks minnow, it's a subject I am rather passionate about, to say the least!

Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND

Love this! I agree it's important not to look too far ahead, we take things day by day. I like the conversation with God about choosing the parents of special needs children. I feel truly blessed that he chose me to be the mother of our daughter who has cerebral palsy. No parent can truly understand what a blessing these children are until it happens to them!

jackie.t profile image

jackie.t 6 years ago Author

Thanks for your comments Cari Jean and yes it's so true isn't it, that understanding only comes from the experience of having a special needs child. I know without a doubt I am a much better person for this experience, and I truly believe my son was chosen for me too!

justmesuzanne profile image

justmesuzanne 5 years ago from Texas

Excellent, hands-on, common sense advice! Your son is lovely! :)Voted up and useful.

writeronline 5 years ago

This is like the perfect hub. On the surface, filled with practical advice and information; from someone who's been there. And beneath the written word, imbued with heartfelt love and understanding about how to cope emotionally; from someone who's been there.

In your gift basket hub, you advise people to go through the alphabet, to help spark an idea, or reaction. I did that here, but only had to go as far as 'A'.

For awesome.

jackie.t profile image

jackie.t 5 years ago Author

Thank you justmesuzanne for stopping by and reading my hub, and for all your kind comments. And yes I think my son is lovely too:)

jackie.t profile image

jackie.t 5 years ago Author

Thank you writeronline for taking the time to read my hub and for your kind words.

This was in parts quite a difficult hub to write, it holds a lot of painful memories for me, which of course still bring up some very strong emotions (excuse me while I grab some tissues!) but I really wanted to share our story.

I just want other people on this journey to know, that even if they can't see it now, there is light at the end of the tunnel, and from where I'm standing now, it's pretty damn bright :)

Laurie 5 years ago

Thank you for this sweet post. We are seriously considering adopting a little girl with hemifacial microsomia and I have been reading everything I can find about it. Some of the pictures and information are terrifying, but yours has brought me hope and comfort. I loved the portion where you imagine how God chooses mothers for these special kids, it gave me a lot of comfort as I think about the many future unknowns.

jackie.t profile image

jackie.t 5 years ago Author

Hi Laurie,

So glad our story was able to give you some comfort and perhaps a little more piece of mind. You can read all sorts of information but my belief is there is nothing quite the same as sharing your concerns, worries and triumphs with someone that's had the same experience!

I hope you go ahead with your intended adoption, your little girl and you will both be very lucky to have each other. And please please if there is ANYTHING more I can do for you just ask, I'd be very very happy to help.

If you go to my profile page and click on the link to my website (gift basket ideas) you'll find a navigation button on the website that says "contact me". Send me a message through there and I can give you my private email address.

In the meantime stay strong and keep positive, no matter how scary it seems now, you will find a way through :)

msshandriaball profile image

msshandriaball 5 years ago

My son has hemifacial microsomia as well, he is 13 and about to undergo the last phase of his reconstruction on his ear. His surgery is 12-21.we are so excited a new ear for Christmas!!!

jackie.t profile image

jackie.t 5 years ago Author

Wow, yes an exciting time! I am still blown away every time I look at my son's ear by the unbelievable talents of those amazingly gifted plastic surgeons. Hope the surgery goes really well, sending lots of good wishes your way :)

Lesley M 4 years ago

Hi Jackie

I have just finished reading this. What a fantastic piece of writing, thanks for sharing it.

And your handsome son looks amazing, how much he has grown. You must be very proud of him!

jackie.t profile image

jackie.t 4 years ago Author

Hi Leslie,

Thank you for your kind comments and yes I am very proud of my gorgeous boy. He has been through an enormous amount for someone of his age.

Have just added a more recent photo, as you can see he's grown even more!

Laura 4 years ago

I recently gave birth to a son with hemifacial microsomia, microtia (i guess anotia since there is no external ear, just a skin tag) and atresia. It was very overwhelming at first, but after going to a session at the local craniofacial clinic and just taking it day by day we're all adjusting to a new "normal". Thank you for this well-written article and it's so nice to see pics of what to expect going forward. I haven't really seen much online of constructed ears and it's hard to find much information elsewhere. I do have the book you recommend and find it very helpful. He's only 4 months old so there's really no reason to get ahead of myself, but I definitely have good days and bad days. Thank you again for this article! And for sharing your experience.

jackie.t profile image

jackie.t 4 years ago Author

Hi Laura,

Nice to meet you!

I'm glad our story was helpful for you, the early days are really really tough and taking it day by day is a very good idea :)

I was so terrified of what I might "see" that it took me 11 months to make contact with another family. I can still remember the sense of relief it gave me to finally be able to share my fears and darkest thoughts with someone who had "walked in my shoes". In fact that feeling was one of my biggest motivators for writing this article!

I would love to know how you're doing and help out in anyway I can (I have a ton of information and lots of pics) so please keep in touch.

You can email me any time on jackleigh58@yahoo.com.

Bobby 4 years ago

Hello everyone. A year or two I have noticed that the left side of my jaw is pulled up, I dont think I have this deformatie, but that the left side of my jaw was forced upwards by an impact. On a normal jaw something pops out near the ear when you open your mouth, but nothing pops out at my left jaw side. Like that part of the jaw is up somewhere. Please help me! (I have already seen a few doctors, dentist, orthodontist and they don't know what is wrong. )

Teresa 4 years ago

Hey Bobby, my son has Microtia., Hemifacial Microsomia and has been complaining of discomfort near the right side of his mouth. We will have to ask a doctor, esp. since his pediatrician just retired, I know how difficult it might be to even find a doctor to get the right answer(s). Please don't give up and keep trying, sometimes it takes several doctors and time to get the right help! Good Luck and wish you the best!!!

jackie.t profile image

jackie.t 4 years ago Author

Yes Bobby Teresa is right you need to see a doctor until someone can tell you what the problem is. I don't know if either of you are on facebook but I have found some fantastic support groups for both hemifacial microsomia and microtia. There are a huge amount of people all going through similar experiences and willing to answer any questions you may have so if you can I'd definitely check it out. All the best to both of you :)

Teresa 4 years ago

Thanks Jackie, Our older daughter is on facebook, so I'll try to look for the support groups soon. Overall, we actually learned more from other Microtia parents, even though our pediatrician was great. NICU doctor too, but called his little ear, "a deformed ear" and said he'd only seen it once. I actually learned about Hemifacial Microsomia from another Microtia mom, not a doctor. I'm a little slow, have PPCM, pregnancy related heart failure, but my focus is on my family and hangin in there!

jackie.t profile image

jackie.t 4 years ago Author

Gosh Teresa it sounds to me like you are coping really well given the circumstances.

We have been very lucky with our experiences. My son was diagnosed with Hemifacial Microsomia at birth and living in New Zealand any child born with a congenital deformity is treated through our public hospital system by the best surgeons the country has to offer all free of charge.

That means that my son was assigned a team of specialists to cover his specific needs, such as ENT, Plastic Surgery, Opthamology, Dental, and more recently respiratory.

They have all worked together on his treatment plan, the appointments are made and we just show up and basically do what they suggest! Be that jaw distraction, ear reconstruction or before the end of this year, braces.

We haven't had to search for the "best" surgeon or struggle with insurance or any of those difficulties I see others coping so well with. And as you have mentioned there are many many people reporting that their doctor had never even seen microtia before!

If you contact me on jackleigh58@yahoo.com I can pass some more info your way re the facebook pages, they are where you'll find many answers and get your greatest support, I'm sure.

Keep well and look after yourself,

Hope to hear from you soon :)

Teresa 4 years ago

Oh my gosh Jackie, Did not realize, so used to trying and not getting help, is why I wrote into Bobby to not give up! Years ago, a week before our first daughter was born, my father's "indigestion" was a fatal heart attack the next night, all my pleas for my pregnancy related heart problems through 3 pregnancies that resulted in emergency c-sections were ignored, even after our second baby was born demise, I barely survived, she didn't. I think the doctor's were so surprised by our son being born with only 1 ear, that they ignored my complaints of having a "concrete block on my chest" (PPCM/CHF), finally after begging, the doctor ordered a blood test instead of the correct chest echo or xray and told me I could go home after my 3rd c-section. I had been advised to breast feed as long as I could, that resulted in a heart attack hours after weaning, several months later. So much more, but the story gets even more incredible from there. Atleast glad to know there are others that are getting help and have not had to go through what we have! I have never written on a blog, always enjoyed reading what others wrote and probably too busy trying to survive for my family that needs me. For someone that took the time and reached out, thanks Jackie! Actually felt good to tell some of my story, along with all your work and efforts, maybe will help someone. With school starting this week, give me a little while, will be in touch soon! Forgot internet is global, we're in the U.S.

jackie.t profile image

jackie.t 4 years ago Author

Wow what a lot you have been through Teresa and how very frustrating not to have your concerns taken seriously. Especially since that lack of concern could have proved to be fatal for you and devastating for your family.

I would love to chat with you more so please do contact me, but no pressure, just when you have some time would be great, even if it's just to say hi!

I would also suggest that if you are comfortable sharing your story that you consider joining hub pages and writing your own hub! I have found it to be a very positive experience, and quite healing in it's own way, just sharing and knowing you are not alone seems to work wonders.

In the meantime this website has a mound of information and an active fb page, it really is a community with people from all over the world contributing and sharing their experiences and stories.

Not sure I can post a proper link here though so just look for:


kind regards,

Kerryn 2 years ago

Hi Jackie, whereabouts in NZ are you? Did you have to travel to Auckland for the surgery? Thanks

jackie.t profile image

jackie.t 2 years ago Author

Hi Kerryn,

Firstly so sorry for the delay in replying. We live in Auckland so no traveling involved. Jaw distraction and ear reconstruction was done at Kids First hospital, the BAHA at Starship. Whereabouts are you located?

christa 2 years ago

I am a Mother of a little girl with hemifacial microsomia. You re hub helpt me a lot and the book you're talking about is new for me and i hope i can find it.

Thnx for writing

Xavier 18 months ago

I'm 25 right now and grew up with HFMS. I had 6 surgeries from 5yrs old to 10yrs old. My mother passed away when I was 13yrs, and I'm glad to see a caring mother write an article like this! Warms my heart that I'm not the only one who went through it at such an early age so drastically. Thank you for writing this

Brigid maguire 2 weeks ago

what a handsome lad. he is only beautiful.

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