Palate Surgery

Tomorrow is the big day -- Maelyn will have surgery to repair her cleft palate. We knew this day was coming...we signed up for it just over two years ago. Easy to talk about and imagine when you haven't yet held your daughter in your arms. Not so easy when you have to think about this little one you now know having to go through such a big operation.

Maelyn has a complete cleft palate. This means that her entire palate is open, from front to back. Most children have difficulty eating as a result of not having a sucking reflex and the fact that there isn't a barrier between the mouth and the nose, resulting in food coming out of the nose while eating. Maelyn, however, has obviously learned to adapt to her environment, as she has no difficulty with eating at all! The only noticeable difference is in the way she drinks liquids. Because she cannot suck, she requires a modified sippy cup and she basically dumps the liquid down her throat. It is an interesting process to observe.

This image is an accurate depiction of Maelyn's open palate...although the cleft also runs right through her gums, which is not shown here.

During the surgery, the doctors will take the muscles and parts of the palate which are lined up along her gums and bring them back across her palate -- creating a soft palate. While all of us have a combination of a hard and soft palate, Maelyn will always have a soft palate. This could result in some difficulties with speech, possibly for the rest of her life. During the surgery, the doctors may try to open up her left nostril, which is quite closed as a result of her complete cleft. If not, then they will most likely wait until she is a teenager to completely fix her nose -- they have to wait until the structure of her face is finished growing. Tomorrow they will also put tubes in Maelyn's ears, as she has some hearing loss, due to a build-up of fluid in her ears. This is also a common condition associated with cleft lip/palate. The surgery itself should last between three and five hours, depending on what they accomplish tomorrow.

I am not nervous for the surgery itself -- I fully trust the doctors and their expertise. I know that she will be in the best hands possible at Sick Kids. What I am nervous about is the other stuff.

Her surgery is not until 1pm and we are not allowed to let her eat as of midnight tonight. I am really anxious about this as our little miss is a huge eater, especially in the morning. Food and trust are intimately tied for this little girl and I am not going to be able to explain why I am not giving her anything to eat all day. It is going to break my heart -- we have spent the past four months convincing her that food will always be available and now we are going to withhold food. Yikes!! I know it is for a good reason, but the thought of it still makes my stomach turn.

I am also nervous about the recovery after surgery. Maelyn is only allowed to eat soft food for three weeks -- this is so that her new palate does not get damaged. We have been trying to introduce as many soft foods as possible over the past few months so that it isn't new for her, but she just doesn't enjoy soft food at all.

Another big worry? The arm restraints. Three weeks of Maelyn not being able to bend her arms -- again, to ensure that her palate isn't damaged, but not a very appealing idea. She is very independent, as are most two year olds, and now we are going to have to do everything for her, including feeding her. She isn't going to like that very much!

And if I am admitting all of my fears, one of my biggest ones is not being able to go with her into the surgical room. The idea of handing her off to a stranger and watching her walk away makes my heart drop into my stomach -- she has already experienced this in her lifetime. I worry, logically or not, about what she will be thinking and how scared she will be.

We do have the perspective that others go through much worse than Maelyn is about to experience. Paul and I will be able to handle it, but it is so hard to think about Maelyn going through it -- I guess that is how all parents feel, right? We love her so much and we know that this surgery is important -- for her to able to eat, drink and even speak as 'normally' as possible.

Please keep her in your thoughts and prayers and we will let you know how everything is going as soon as we can. Love to you all!