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.
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 :)
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."
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
If you enjoyed this article, please:
+ Rate it.
+ Share it.
+ Comment on it.