What causes a cleft
lip/palate? A cleft lip and palate happens when the tissue that forms
the roof of the mouth and upper lip don't join in the first couple months of
pregnancy. It could be due to the mother's poor living conditions, exposure to
chemicals/pollution or poor prenatal care. The cleft can be unilateral
(occurring on only one side of the lip/palate like Samuel's) or bilateral
(occurring on both sides of the lip/palate like David's). A cleft lip and
palate opening goes from the nostril, through the lip and gum line, and all the
way through the roof of the mouth to the uvula.
How does a cleft
lip/palate impact everyday life? Having an open palate (roof of your mouth)
can cause problems breathing, feeding, hearing, or speaking. We'll have
to see how the munchkins' cleft issues affect them after we get to
know them. Most kids with cleft issues eat most foods just fine. Sometimes food
can get caught in their open palate, and we will need to use a booger-sucker
(technical term) to get the food out. Yum! If we don't get all the food out,
well, we will definitely notice the munchkins' cleft issues when they sneeze...
and food comes out their noses later! Kids with cleft issues have more frequent
ear infections which can cause hearing issues, and will usually need ear tubes
at some point. Many kids with an unrepaired palate can speak, but may not be
intelligible to those who don't know their "accent". Sometimes kids with an
unrepaired palate are mostly intelligible, but speak with a nasally voice. I
suspect we will be comfortable with day to day management of our boys' cleft
issues by the time we get home from China.
So, if the open palate
causes no problems for the munchkins, why do they need surgeries? The
number one reason is speech. With no way to close off the air that escapes
through their noses, it would be all but physically impossible for them to say
certain consonant sounds. They will need speech services to help them learn how
to correctly use their new palates and speak clearly. Having corrective surgery
will also help to stabilize their mouths. It is common to wait until 4-6 months
after any surgery to start or resume speech services. We'll have to see what our
doctors say when we get to that point.
How many surgeries will they
have? We have no idea. David already had a lip repair in China. His palate
is still wide open (extra wide since he had a bilateral cleft), so he will at
least need a palate repair. Many times kids need additional surgeries as they
grow. Samuel may or may not be able to have his lip and palate repaired at the
same time. I think that depends on the surgeon, and the extent of the repair.
Other possible surgeries would include ear tubes -- not a huge surgery, but a
surgery nonetheless. We hope for one palate surgery for each boy, which needs
to heal correctly, with no holes, and function correctly as far as speech goes.
Sometimes after palate surgery, a fistula (or hole) opens in the palate that
needs to be surgically repaired. Down the line they may need a procedure to
"release" the lip if it healed tight after the lip repair surgery. A tight lip
will impact the jaw and teeth. As they grow, they may need bone grafting to
fill in the gum line. Sometimes a surgery is needed to lengthen the back of the
palate as they grow. There will probably be some dental procedures depending on
how their teeth come in. These surgeries will happen over the span of years.
Certain things will need to grow and develop before they can do some of the
corrective surgeries.
Thinking of every possible procedure and surgery
all at once is too overwhelming to think about. Our plan is to really just live
a very normal life day-to-day. The munchkins' cleft issues are just one
small part of who they are.
