Feeding issues

I wanted to take some time to explain some of the issues that children with clefts have with feeding.

Here is a picture of Ethan with a soft palate cleft.

Judah has a cleft in his hard and soft palate, but it is possible to have either or, and variations of both. Both parts are very important for feeding and speech. The hard palate is in the front of the roof of your mouth and forms a partition between the nasal passages and the mouth. About midway back there are mucous membranes called 'rugae' that help facilitate the movement of food backwards. The rugae continues back into the soft palate which is composed of muscles.The muscles and soft tissue help you swallow and also regulate air during speech. In Judah's case, he is missing a portion of all of these. He also does not have a uvula (the dangly thing in the very back of your mouth). 

The first stage is bottle feeding. Children with cleft palate cannot generate suction. There are a few different types of bottles, but Judah used the Haberman. With the Haberman bottles, you keep pressure on the reservoir nipple so the baby's chomping and tongue movement helps the milk come out. There is no handing off the bottle to Judah to let him fend for himself, I have to manually feed him every bottle and that takes at least 20 minutes every time. Some babies cannot master this early on and require a feeding tube.

Can you imagine swallowing with your mouth open all the time? That is the only way Judah knows how, and that is also why palate repair is extra hard. He will have to relearn to eat since his current method will not work anymore. 

Weight gain is also a very important issue. Most babies with clefts do very well, all things considered, but when compared with other babies the same age, they are usually underweight. If a baby also has cleft lip, they have to achieve a certain weight and be steadily gaining to even be considered to have their lip repair. 

The second stage is purees or 'solid foods', which you generally begin feeding babies around 6 months of age. The absence of portions of the hard and soft palate make this very difficult. The first problem is that much of the food gets pushed up into the nasal passages and that can be very irritating. There is no partition to protect the sensitive parts of the inside of their noses. Imagine when something goes down the wrong way and it hurts so much! This leads to what is called 'nasal regurgitation'. Much of the food Judah eats comes right out of his nose, sometimes on its own, sometimes when Judah sneezes to clear it out. Again, the absence of soft palate makes it very difficult to swallow what food he does manage to get back far enough. Judah has had such problems with this that he is not able to eat pureed food on a daily basis and so he is still only eating bottles with cereal in them. Cleft moms spend a great deal of time trying to figure out what consistency allows their child to eat best.

Most babies have their palate repair around 10-12 months. Babies without clefts can usually start more easy to manage solids like dissolving puffs and other easy to manage foods around this time. These pose a choking hazard to cleft affected babies. I have tried these with Judah thinking they would just melt away and, even when I broke off tiny pieces, he chokes and gags and usually throws up because he can't manage to get it down.

Judah hates when I try to take pictures of the inside of his mouth, but sometimes I inadvertently catch one!

After palate repair babies must relearn to eat. They became accustomed to the ways they managed to eat before repair, so (beyond just the physical pain of being post-repair) these 'new' parts of their mouths are foreign and they must learn to adapt. However, the palate repair does not solve all problems. Once the palate is repaired, muscles that never existed before are now in the right place, but are not strong enough and it takes time to strengthen and develop them. It also takes a great deal of time for the palate to completely heal, so we must be careful of 'sharp' foods (like chips and crackers) that can harm the freshly repaired palate. Sometimes, the palate does not completely heal and leaves behind holes called 'fistulas' that end up causing the same problems as before repair, and also require additional surgeries to correct. Also, our children have many texture and taste aversions that last long into childhood.