Saturday, December 27, 2008

The Surgery

Next week Nathan and Ryan will have a minor surgery to repair their tongue tie, also known as ankyloglossia. The procedure is called a frenectomy. This is different than a frenotomy, which they have already had done.

Tongue tie is a condition where tongue is very tightly attached to the floor of the mouth. The tongue is attached by a (usually) thin membrane called the frenulum. Sometimes the frenulum is so tight that it inhibits the tongue from functioning properly. This can cause all kinds of problems.

In order to suck properly a baby needs to be able to both extend and lift their tongue to express milk from the nipple. When a baby is tongue tied the tight frenulum prevents the tongue from extending past the lips or gums and makes the baby unable to lift their tongue enough to get a good latch.

Up until recently most tongue ties were resolved at birth by a quick, painless procedure called a frenotomy. The midwife or doctor simply snips the frenulum. No anesthesia is needed because there are no nerves in the frenulum. No sutures are needed because it doesn't bleed.

However, some doctors don't believe in performing routine frenotomies anymore. They believe that the frenulum will eventually stretch enough so that it won't cause any problems. This is not the case. Tongue ties can cause problems breastfeeding, speech delays, difficulty swallowing and chewing, and other issues as the child grows older.

When Joshua was a baby the doctors did not want to clip his tongue tie. They reassured me that the problems we were having with breastfeeding and projectile vomiting would resolve on their own. They said nobody does frenotomies anymore. I believed them. Ironically, the AAP released a newsletter on this very subject in the summer of 2004. Joshua was born in June 2004. I guess nobody had read the newsletter yet!

When Joshua was a baby he had major problems nursing. He'd cough, choke, and gag. He clicked when he was sucking. He gained weight very, very slowly at first. My nipples were extremely sore and cracked and bled. Yet nobody would do anything to help!

Finally, the doctors became concerned when Joshua was 2 1/2 and still not speaking. He started solid foods at 11 months and would frequently gag or choke on anything that he ate. The last straw for me was when he choked so badly at lunch one day that I had to do the Heimlich Maneuver. He was blue and I thought he was going to die from choking on his food. That was enough to convince the doctors that there was a problem.

I had taken J in to see a speech therapist around the time that he turned 3 years old. She was concerned that J was unable to move his tongue enough to form the sounds necessary for proper speech. His range of motion was severely restricted.

We had a consult with an ENT who agreed that J was severely tongue tied. There are several types of tongue tie. A classic tongue tie causes a heart-shaped tongue and the frenulum usually comes out to the tip of the tongue. Less commonly you will come across someone with a posterior tongue tie. This is when the frenulum is farther back along the base of the tongue. Joshua had a posterior tongue tie. He did not have a frenulum that extended to the tip of the tongue but it still pulled into a heart shape and very fat and wide. He could not extend his tongue past his lower gums.

Last December Joshua had a frenectomy. He was 3 1/2 years old when he had it done. A frenectomy is different than a frenotomy because a frenectomy is done under general anesthesia and requires sutures to be placed along the underside of the tongue. You can see some (slightly graphic) pictures of the procedure here.

After Joshua's surgery we had a follow-up appointment to re-evaluate his range of motion. It was then that the surgeon told me that she had been a little too conservative with the procedure and that J still had restricted range of motion. J's speech therapist felt that she could probably work with him and see improvement and that we should wait to see if a repeat frenectomy would be necessary.

A year later Joshua's speech has significantly improved! He no longer chokes when he eats. He is still learning how to use his tongue though. He often tells his speech therapist that he can't do the exercises because his tongue won't reach far enough. We're working on that part!

Tongue ties frequently run in families. They are also related to lip ties-otherwise known as a tight labial frenum (or frenulum.) Interestingly enough, Leila & Sarah are both lip tied. Their labial frenums (the membrane that connects the upper lip to the gums) are very thick and extend down into the gums. This is why they both have gaps between their top front teeth. We are not having theirs clipped at this time. They may tear the membranes on their own during childhood making the surgery unnecessary. If the membrane is still their when their permanent teeth start to erupt we'll have it clipped.

It's no surprise to me that N & R are also tongue tied. That makes 5 out of 6 kids with some type of frenulum issue in my house! And interestingly enough it is the 5 kids who all look like Jason. Defective genes? I blame him for sure! (I also blame him for my eggs splitting into MZ twins. I'm sure he's the one responsible!)

When N & R were a few days old I noticed their tongue ties. I know that the doctors are hesitant to do anything about them. So I had a midwife do the frenotomies in my living room. A few quick snips and their tongues looked much better. The heart shape was gone and there was no crying or blood. It was so easy! But it didn't help. Because the babies have posterior tongue ties, the frenectomies are needed.

Next Friday the babies will be put under with general anesthesia. The surgeon will use a special tool to extend their tongues and then he'll cut the frenulums and suture the underside of their tongues. It's a fast surgery-just about 15 minutes. Joshua's surgery was easy aside from some a reaction to the anesthesia. Hopefully N & R don't have any issues and the surgeon is not too conservative with his scalpel.

The frenectomies should resolve most of our breastfeeding troubles. Once the babies are able to get a good latch it will heal my cracked and sore nipples. That will put an end to the thrush. They'll be able to get a much better milk transfer so that should stop the plugged ducts and mastitis. It should also get rid of their constant gas, vomiting, and fussiness. I can hope, right?

For more information about tongue tie you can see a very informative slide show by a dentist named Dr. Brian Palmer. View that here. Dr. Palmer is an expert on this topic. I would suggest that any parent of a child with tongue tie read through his website.

Because tongue tie can go undiagnosed, and even go untreated after it is diagnosed, many mothers stop breastfeeding as a result. With all of the complications can you blame them? Most of these mothers have no idea that their child is even tongue tied! Issues like sore nipples and low milk supply can go undetected or be blamed on other causes. For more information about tongue tie and breastfeeding (including a list of surgeons) visit the low milk supply website.

And there you have it. More than you ever wanted to know about tongue tie!
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