Friday, July 5, 2013

It's July.

Normally in July I'd be complaining about how ridiculously hot it is out.

Only, it's not right now.  It has been beautiful here.

This year, I'm focusing on Cleft Awareness.

Did you know that cleft is one of the most common birth defects in the US?  It occurs in roughly 1 in every 600 births.  They have no idea what causes cleft.  It could be environmental, it could be genetic.  They just don't know.

Cleft occurs when, during the formation of the facial structures, the lip, palate or other facial structures do not "meet" to fuse together. 

Miss Sunshine's cleft is commonly associated with a syndrome called Pierre-Robin's.  Miss Sunshine does not have Pierre-Robin.  We have no family history of cleft.  (We have family history of a lot of other medical issues.  But not cleft). I did not take any medications commonly thought to cause cleft during pregnancy.  I took prenatal vitamins, did not consume any "forbidden" foods, was not exposed to radiation, or any other "toxins" during my pregnancy.  We really do not know why she has a cleft.  She just does.

You learn a lot when you have a child with a birth defect.  (I'm not going to get on my soapbox right now.  Maybe later).  Things you never had any concept of before that happens.  I had no idea how common cleft was.  I had no idea there were different kinds of cleft.  In fact, I remember when we were in the delivery room and the nurse announced she had a cleft palate.  I had a C-section, so I was pretty much tied to a table.  I told Daddy Mac to go look at her and see what was wrong.  He came back to my said and told me "I don't see anything different about her.  I don't know what the nurse is talking about.  Her lips are fine."  It wasn't until we were in the recovery room, and I was holding her that I realized what the nurse meant.  It wasn't until she cried for the first time that I saw something was different than with Monster Boy.

But she was still beautiful and perfect to me. 

Tuesday, July 2, 2013

Crazy Summer Days

It's been a beautiful summer around these parts.  I had planned to spend a little time updating, but we've been running non-stop since school let out, and it just hasn't happened.

However - July is Cleft Awareness month, so I'm going to attempt to write at least one post a week (hoping to maybe get something short up each day) about cleft and our journey.

For my first post - I'd like to talk a little bit about Miss Sunshine's cleft.  She was born with an incomplete cleft of the soft palate and bifid uvula.  Her type of cleft is not visible unless she opens her mouth wide.  It does have a great impact on her ability to eat, however.  Because the roof of her mouth was completely open into her nasal passages, she could not create suction in her mouth.  So she had to use a special type of bottle - in her case, a Haberman (also called a Medela Special Needs Nurser) - which didn't require as much suction.  In fact, her bottle had an elongated nipple with a chamber that we actually squeezed to help her eat until she was big enough to have a little bit of suction and eat on her own.  She also had many ear infections and persistent fluid in her ears because her Eustachian tubes were completely open.  In fact, she failed four different hearing tests before her first set of tubes were placed, and does have minor hearing loss in one ear due to scarring.  Her overall hearing still tests within normal range, but monitoring her ear tubes is an important part of her care, as she made need them for several more years.

Miss Sunshine has had a total of four surgeries - including five sets of ear tubes and her palate repair.  When her palate repair was performed, the surgeon cut along her gumline on the inside of her palate, as well as along the cleft.  He then pulled the loosened tissue together in the middle with sutures, and the rest of her mouth was packed but left open to heal on it's own.  The muscles in the roof of her mouth also had to be repositioned during this surgery.  In a normal palate, the muscles cross the roof of the mouth from side to side.  Due to her cleft, Miss Sunshine's muscles actually ran front to back, with a gap in the middle where her cleft was.  So all those muscles had to be cut, and turned and repositioned so that they ran across the roof of her mouth like they were supposed to.  That is a necessary part of the procedure, as it allows for proper speech, and also helps to protect her Eustachian tubes, meaning eventually she will no longer need tubes in her ears.

Miss Sunshine spent three years in speech therapy, before being released.  Prior to her palate repair she was not able to make any hard consonant sounds.  She could make MMMM and NNNN sounds.  So, her first word was Mama, because it was one of the few sounds she could successfully make without a repaired palate. She wasn't much of a babbler, and I think a lot of that had to do with her inability to form certain sounds. 

That's the basics behind her cleft.  There is much more detail, which I will be sure to make posts about as the month progresses, but that's the beginning of our story.


Miss Sunshine's palate - before repair

What her special bottle looked like.

Her palate one week post op - kind of blurry but you can see where they opened the roof of her mouth to get the needed tissue for the closure of the cleft.

Miss Sunshine's palate three years post-op.  Unless you know what you are looking for you can't even see the scarring.