Birth Defects and Abbe Flaps – Cleft lip and Palate story

December 21, 1963 – Matthew is born

It seems like only yesterday I made the journey down the well used birth canal that belonged to my mother.  I was number 7 of a canal that had 6 previous versions come out breathing and 3 that were not as lucky as the rest of us.

Matthew @ 2 years of age

The image below is me and my Dad at one year old after a surgery.

It was 1963 and I was about 11 years younger than Patrick the number 1 born, the guy that made my existence relatively easy in comparison.  The older kids seemed to take the brunt of any errors that may be made due to lack of experience as a parent.

As I may have mentioned before by the time I came along it was “here is the screwdriver now go play with the electrical socket” Truly I jest about that but I think parents of large families have seen so much in the previous kids wake that the last guy becomes almost invincible.

Needless to say I was not invincible but I have come out of the experience of having older brothers and sisters with a different outlook. I think I may have been given a bit different treatment due to “my affliction” Being born with a cleft lip and palate must have been a bit of a shock to my parents.  I think my siblings were most likely a little nicer to me, until I got older anyway and just became annoying.

Although I was there for this next part in the story it is based on memory and conjecture, things I have heard from my mom and my siblings I may get a few facts wrong but I am happy to be corrected.

When I was born with this bilateral cleft lip and palate the Dr’s were worried about how my mom might react so they took me away cause this upper lip and palate were a little frightening to look at to say the least.  When they finally told my mom the “bad news” “Mrs. Lynam your son has been born with a birth defect, he has a cleft lip and palate” I can only assume knowing my mother that she would have said something like. “Yeah and… bring me the kid” (paraphrasing)

The best definition I can give you about a cleft lip and palate is that as you are hanging around in the womb just waiting to be born and all of your parts are coming together, arms have hands and fingers, legs have feet and toes added eye sockets have two working eyes you have developed a bit of a penis and everything else is coming along just fine, even a brain inside the cranium. Your upper lip is supposed to come together along with the roof of your mouth but for some reason the womb workers run out of crazy glue. http://en.wikipedia.org/wiki/Cleft_lip_and_palate  this explanation mentions nothing about crazy glue, but I think it they must have just missed that part of the text somewhere, I am sure there is crazy glue holding all of us together.

So here you have this baby with a funny looking mouth and nose and really no top to the roof of his mouth as he can lick the inside of his nose with his tongue (Again I have no recollection of this I am just assuming) now you have to feed him, I think there is a legal obligation as a parent somewhere in the annals of history.

One of the issues that you as a child with this affliction have with a hole in the roof of your mouth and in your lip is the inability to suckle at the teet of your mother no suction at all, just lots of air moving around.  So from birth you are fed directly from a cup and you never have a bottle or soother shoved down your gob.

When you are 6 months to a year old you have surgery to close the lip at two years of age they sew the roof of your mouth together but not too well so you have a small hole in the roof of your mouth until you are 43 and you annoy the hell out of people with this weird high pitched squeak as you pull air through your nose into your mouth.

For most of your childhood you can do cool things like take a young blade of grass and put it into the hole in your mouth, I don’t mean the opening of your mouth but the little hole that hasn’t been closed with surgeries and then you pull this blade out of your nose.

I thought it was a hell of a trick but eventually I stopped doing this, as it wasn’t getting the reaction I wanted.  Another surgery at 3 or 4 years to continue the process of reparation along with braces for five years and bone grafting surgeries to create stability in your upper jaw for potential tooth implants down the road.  I lost count at about 8 or nine surgeries with one of the last ones coming about 5 years ago when they were finally able to close the little hole in the roof of my mouth, no more air squeaks from your little brother Penny.

One of the surgeries that I considered to be the most successful was called the Abbe Flap and I got that when I was around 19 or 20 years of age.  This surgery actually changed my appearance and as I always thought of myself  as not very good looking thereby lacking confidence and some modicum of self worth I was pleased by the results. http://www.ncbi.nlm.nih.gov/pubmed/17667662

The abbe flap worked this way.  With the cleft lip my upper lip was narrow and sat very closely to my teeth and I found the scaring was unflattering in pictures, the fact that the upper lip was tight to the teeth made the insertion of a required dental appliances unpleasant and painful.

The Abbe flap works this way. First of all you are put to sleep while the Dr. cuts your upper lip in ½ right in the middle he then cuts a piece out of your lower lip, but he doesn’t just cut out the piece he cuts the piece and leaves it connected to your lower lip and sews this piece from your lower lip into your upper lip.  He leaves the lower lip connected so that blood can flow into the upper lip and create a living piece of flesh.

Your lower lip is attached to your upper lip in my case for three weeks and you have two holes on either side of your mouth where you can suck pureed food through a straw.  Mom made very good pureed food, anything on the table was blended and I ate that, one of my favorite things was ground beef, mashed potates and gravy damn that was good.  I also ate my fair share of milkshakes.

Three weeks later you go back to the hospital and they very smoothly make a slice though the lower lip at its connection point to your upper lip and they cauterize the open skin and voila you have a little divot in your upper lip just like everybody else, you are no longer different.

You still talk funny and have scaring but you are really very happy with the end result, not the swollen god awful mess that you saw when you first woke up and looked in the mirror and your mouth was sewn together and there was hard crusty blood on the suture line.

I have been lucky. I have brothers and sisters around me who loved me and treated me as just another one of the kids and a wife and kids who also give me purpose in my life.  I guess I could have gone down the road of despair and poor me, but I don’t think it would have been allowed – I am a lucky man all in all.

On my way to shoot hoops and raise money for the kids at Strathcona Community Centre