As I alluded to in a previous post, we have been re-considering the "smile surgery" options for Emma. It may seem like a "no-brainer" in the way that if you had a child who could not hear, you would likely get them cochlear implant, or if they had a missing limb you would get a prosthetic. However, there is simply far more to consider when altering the face.
Our faces are very much linked with our identity, and are judged possibly more than anything else about us. Aside from beauty considerations (which are not really on the table, as beauty is completely subjective and is more easily manipulated with non-surgical tools), the expression and first impression that we give in person is usually related to our face, and even more so, our ability to offer a friendly smile.
That said, we have increasingly felt that Emma has been truly blessed with a large amount of facial expression, compared to others with Moebius Syndrome, and a personality that quickly compensates with expressivity! We are hesitant to do anything that could potentially leave her at a greater disadvantage.
Since we first began to pursue (and subsequently paused) the surgical option I have been doing as much research as possible, speaking with individuals with Moebius, other mothers of children who have had the surgery etc. While we decided about 20 months ago to suspend the surgical route to pursue therapeutic treatment, which has had some significant results but not as much as we had hoped, we think it is unlikely that therapy will achieve as significant an impact as surgery.
When we were at a routine appointment with the cranio-facial team in February, her surgeon made a very truthful observation, that while we should consider her own wishes, Emma is too young to fully understand the implications of either choice, nor can she anticipate what social issues are likely to arise in the next few years as she reaches adolescence. So, as her parents, and as parents do frequently, we need to make a decision that we feel will be best for her.
At that time she was still saying she didn't need the surgery because her friends like her smile. When I asked her what she wanted, she said she wanted to smile. We would not feel the need to look at surgery again, were it not for Emma's own desire to smile "so that people can see when [she's] happy."
So we met with the surgeon again last week, to specifically discuss the procedure known as the temporalis tendon transfer.
If you place your fingers on your temples and clench your teeth together, you can feel the muscle contract. It is one of two, the other being the masseter that runs from your cheekbone down the cheek to under the jaw, that are chewing muscles.
The procedure relocates the temporalis to connect it to the corners of the mouth, where you and I have a crease from the nose to our lips. When the jaw is clenched, the muscle activates producing a smile. This picture shows an example of the procedure on someone with only one side paralysed.
Our faces are very much linked with our identity, and are judged possibly more than anything else about us. Aside from beauty considerations (which are not really on the table, as beauty is completely subjective and is more easily manipulated with non-surgical tools), the expression and first impression that we give in person is usually related to our face, and even more so, our ability to offer a friendly smile.
That said, we have increasingly felt that Emma has been truly blessed with a large amount of facial expression, compared to others with Moebius Syndrome, and a personality that quickly compensates with expressivity! We are hesitant to do anything that could potentially leave her at a greater disadvantage.
Since we first began to pursue (and subsequently paused) the surgical option I have been doing as much research as possible, speaking with individuals with Moebius, other mothers of children who have had the surgery etc. While we decided about 20 months ago to suspend the surgical route to pursue therapeutic treatment, which has had some significant results but not as much as we had hoped, we think it is unlikely that therapy will achieve as significant an impact as surgery.
When we were at a routine appointment with the cranio-facial team in February, her surgeon made a very truthful observation, that while we should consider her own wishes, Emma is too young to fully understand the implications of either choice, nor can she anticipate what social issues are likely to arise in the next few years as she reaches adolescence. So, as her parents, and as parents do frequently, we need to make a decision that we feel will be best for her.
At that time she was still saying she didn't need the surgery because her friends like her smile. When I asked her what she wanted, she said she wanted to smile. We would not feel the need to look at surgery again, were it not for Emma's own desire to smile "so that people can see when [she's] happy."
So we met with the surgeon again last week, to specifically discuss the procedure known as the temporalis tendon transfer.
If you place your fingers on your temples and clench your teeth together, you can feel the muscle contract. It is one of two, the other being the masseter that runs from your cheekbone down the cheek to under the jaw, that are chewing muscles.
The procedure relocates the temporalis to connect it to the corners of the mouth, where you and I have a crease from the nose to our lips. When the jaw is clenched, the muscle activates producing a smile. This picture shows an example of the procedure on someone with only one side paralysed.
With exercises and therapy, the smiling action will become more automatic and may even achieve spontaneity.
This video shows a friend of ours who had the procedure when she was 16. At about 1:39 she demonstrates.
It's still not an easy decision to make. All surgeries have potential risks, and this is particularly sensitive as it involves our baby girl's beautiful face. Unfortunately the Bible does not specifically reference such procedures, but we have been praying and seeking wisdom and discernment. We believe that God's will is most often not specific to choices we make, but why and how we make them and are prayerful that in this case, we are following His will. If however, God should be opposed to the surgery, we have asked Him to make that abundantly clear.
We were offered two options for scheduling, based on our desire to have the surgery while school is out for the summer. The first is May 23rd, exactly two months after our appointment last week, and exactly the amount of time needed for pre-op exercises, or a date in August that was not at all suitable because all the follow-up and healing would be after school starts.
We accepted the May 23rd date, also 3 days after our 10th wedding anniversary, and are preparing ourselves for that. Emma is excited, and while I am being honest about the process and recovery, I do not want to scare her, so am being a little vague on some of the details. I figure that's best?!
So, please pray with us about this situation, and for the best possible outcome for Emma. She truly is a light in our world and I can only imagine how much brighter she will feel and shine when she is smiling on the outside as she does in her heart.
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