Before and After Tongue Reduction - More Pictures

In the last post with pictures from before and after the surgery to reduce the size of Micaelyn's tongue I purposely chose pictures with a more natural expression to show the difference in her "normal" expression.  As you can see from the pictures the change was quite dramatic, but it was also amazing to see how even her smile changed.  Before the surgery Micaelyn's smile was very open-mouthed, all tongue.  Even when smiling you didn't see her teeth.  After the surgery her smile completely changed.  Although she was adorable before the surgery, it was great to see the visible changes that resulted from the surgery giving her a more normal appearance.  We are especially glad we got this done before she started school so she never had to deal with kids making fun of her for her enlarged tongue.

Here are a bunch of pictures to illustrate the change.  You can see from the pictures before the surgery how open-mouthed her smile was and that you never saw her teeth because her tongue was too big.

Although Micaelyn was intubated for several days after surgery and after that she was in too much pain to feel much like smiling it was obvious even before we left the hospital that her smile had changed.  She had never been able to smile with her mouth closed before so it was amazing to see her sweet smile with her mouth closed.  Because smiling with her mouth closed was such a big deal we still have to remind her sometimes that it's okay to show her teeth when smiling for the camera.  We love the fact that her teeth are actually visible now!  Although it has been a couple of years now since her surgery I've decided to post only pictures that were taken within a couple of months of the surgery to illustrate how significant the change was without any differences related to changes as she grew.  You can see from the pictures how after surgery she could not only smile beautifully with her mouth closed but also that when she had a big smile her teeth were completely visible as opposed to the smile she had before surgery in which her enlarged tongue filled her mouth to the point where even with her mouth open wide you couldn't see her teeth.

 

 

Before and After Tongue Reduction Surgery

It is said a picture speaks a thousand words, and I think that is especially true in showing just how much Micaelyn needed the tongue reduction surgery.  There are different types of tongue enlargement - length, width, and depth.  Micaelyn had all 3 types with the depth being her most significant problem (and also the most difficult to deal with surgically).  Some people found it to hard to understand her need for surgery since her tongue did fit inside her mouth, but her tongue filled up her mouth so much she almost never closed her mouth other than to swallow.  Even at 4 1/2 years her mouth was always hanging open.  A major concern was the fact the pressure from her tongue was causing her lower jaw to be pushed forward so much that she had developed a significant underbite.  If she had not had the surgery the underbite would have continued to worsen so that by the time she was a teenager she would have needed major jaw reconstruction surgery along with the tongue reduction surgery.

Here are some pictures of Micaelyn before the surgery.  You can see how her mouth was always open. You couldn't even see her teeth because her tongue protruded beyond them.

 

 

 

 

Before the surgery Micaelyn very often had her tongue completely hanging out of her mouth, especially when she was busy doing something.  This next picture was taken completely spontaneously before she realized I was taking pictures (whenever she saw me with the camera she would pull her tongue in so even though she often looked like this it was hard to capture it in pictures).

Here is another one with her tongue stuck out.  It looks like she was sticking it out purposely for the picture, but it's just because she just happened to look towards me right as I was taking the picture.  We were at one of Joshua's basketball games, and because she thought I was still taking pictures of him I was able to get one of her without her pulling her tongue back in to pose for me.

This next picture has always been one of my favorite pictures because I just happened to catch her with her mouth completely closed (she had probably been swallowing).  We always thought she was beautiful, but whenever she had her mouth closed it was amazing to see just how beautiful she truly was without her tongue hanging out.  Getting an occasional glimpse of her with her mouth closed gave us a preview of what she might look like after surgery.

This is at the hospital 4 days after surgery, our first time to ever see her actually keeping her mouth closed.

This is when we were getting ready to go home from the hospital.  We were still in awe at how different she looked once she was able to keep her mouth closed.

 A few more pictures post-surgery...

I purposely chose non-smiling pictures for this post so as to show the difference in her natural expression.  I will do another post to show the difference in her smile.  However, since she loves to smile for the camera I don't have many of her not smiling (even in some of the ones above she has a small smile).  This is one of her in time-out, her least favorite place - no smiles for her here!  She can put on quite a drama scene when she gets sent to time-out!

BWS - Enlarged Tongue (macroglossia)

One of the most common symptoms of BWS is an enlarged tongue. Sometimes the enlargement is mild enough to be hardly noticeable except to medical professionals. Other times the tongue is large enough to interfere with the child's ability to close his/her mouth and cause problems with feeding, teeth and jaw development, and even the ability to breathe, particularly during sleep. When we got Micaelyn at 3 ½ years old her enlarged tongue was immediately obvious to us. The only time she ever actually closed her mouth was when she swallowed. Her mouth hung open all the time, often times with the tongue visibly protruding. You almost never saw her teeth, even when she smiled, because her tongue covered them up. Of greater concern than the fact she never closed her mouth (though that alone would have caused social problems once she started school) was the fact she was developing a severe underbite as her lower jaw was growing forward to accommodate her enlarged tongue. Perhaps the greatest concern was the many signs of sleep apnea she displayed.

Though we hated the idea of putting Micaelyn through so much pain we knew she needed surgery to reduce the size of her tongue. While her tongue was certainly longer than it should have been, it was also much wider and thicker than a normal tongue. In fact, before her surgery the surgeon had actually expected based upon the thickness of Micaelyn's tongue that after she had recovered from her first surgery he would have to do another surgery using a laser to further reduce the thickness, but thank goodness he managed to do such an incredible job with the first surgery there was no need for the second.

The surgery was very hard on Micaelyn. She was in the PICU for 4 days, on a ventilator for 3 days. She was supposed to remain sedated while on the ventilator, but her body had an amazing tolerance to the sedation drugs (the possibility of prenatal exposure to drugs was proposed to us as a possible explanation for such a high tolerance to the drugs). She not only had to deal with the extreme pain from the surgery, the ventilator, NG tube, catheter, and multiple IV's, she also had to be physically restrained to prevent her from pulling out all the tubes. She was constantly being pumped full of drugs that caused her to be combative and even more miserable. Once she finally got off the ventilator and many of the drugs she started having withdrawal attacks that made it difficult to even hold her. Beyond the initial hospitalization and recovery period she continued to experience great pain for several weeks (eating and drinking was torturous for her), and she continued to complain about the pain for several months after the surgery. To make matters worse when we first brought her home from the hospital she nearly completely shut down emotionally. I could see obvious signs of attachment issues (this was why we waited a full year to do the surgery after bringing her home – so she could learn to trust us before we put her through such a painful procedure). Thankfully as she recovered physically she also recovered emotionally, and today she has no lasting effects from the surgery (other than an eagerness to show off her “princess tongue” to anyone and everyone!).

A before and after comparison of her natural expression

Before surgery her mouth was always open.  It was amazing to us to see how different she looked after surgery!

A before and after comparison of her smile

It was amazing to see how different her smile looked.  Before surgery her smile was very open-mouthed, and even with her mouth so wide open you still didn't notice teeth due to her enlarged tongue.  We never expected to see such a visible difference from the surgery!