Cleft Palate, reflux, torticollis - parent's perspective, experience, story

Hello,

In this video I am telling our story about my son's cleft palate from my perspective - mom's :) I hope it can help somebody out there in same/similar situation!
The story is not yet finished and it will be many years for that - I will make updates :) surgery nearing now!

ATTENTION! I am saying in the video that my son turned a lot in my stomach to the very end of my pregnancy and that's why I got inducted. I forgot to mention that his umbilical cord was connected to the placenta on the side of the placenta NOT in the middle which is the norm. This is ONLY MY THEORY - maybe this umbilical cord position caused my son discomfort in the stomach and made him move so much and MAYBE it was some kind of reason of his jaw being small and cleft palate because of not enough space for it to develop properly.
He was also born with a cramped muscle at his right side of the neck so he didn't want to keep his head straight and we are still fighting with that but it's MUCH MUCH better. At the same right side of the neck he has a hard growth that will be removed during the surgery. These 2 things also make me think even more that the position of the umbilical cord cause him to keep his head in a weird position in my stomach which could result in smaller jaw, cleft palate, cramped muscle and a growth on the neck. BUT THIS WAS NOT CONFIRMED by any doctor, it's my OWN speculation.

For the cramped neck muscle, we didn't see it until around 2 weeks after birth. That's when he started to try to use his muscles more and it started to be visible. He was keeping his head to the right and body in a banana shape. We got a physiotherapeut that visited us at home, showed us exercises for my son's neck. We stretched him a lot in different positions, every day few times a day. He hated it and cried... It was very sad to do but necessary. Later on we had to and still have to strengthten his left side of the neck. Because of constantly keeping his head to the right, the left side didn't have enough exercise that the muscles are weaker. Strengthening them should also help with getting the head straight in the middle. He is not so much cramped anymore so no need for stretching but strengthening the other side. The cramp is professionally called torticollis.

Because of the reflux and small jaw/cleft palate my son made milk bubbles the first 3-4 months, especially when lying on his back cause his breathing then was more difficult for him (nothing crazy just you could hear the breathing more, more friction). There could be one big bubble or sometimes tons of small ones :) Also, sometimes we could hear he's swallowing a lot more than necessary during feeding or apart from it suddenly, so we knew it's reflux and if it was real bad and hurting him he started crying after all the swallowing :(

Reflux is when stomach contents go up the feeding tube/pipe and burn it, making wounds, because stomach contents are normally acidic. This happens because the muscle that is supposed to stop it from happening is still underdeveloped and in MOST children develops normally during 1 year of birth (that fortunately happened for us). Stomach acid neutralizing medicine is supposed to neutrilize the acidic nature of the stomach contents so even if they go up the feeding tube/pipe they don't burn and don't make wounds, so the child can eat and is not in pain. However, for SOME children it can have side effects like for ours - for example constipation. The acidic nature of stomach contents also protects from infections mainly caused by bacteria, so when you neutrilize the stomach contents it can increase the risk for (mostly bacterial) infections.

For the surgery my son has to not use a pacifier and stop drinking from a bottle. The reason is for him not to put things that could destroy the healing process of the surgery in his mouth and in the healing period sucking motion could also destroy the effects of the surgery. So what I did is, I stopped giving him pacifier 2 weeks after birth when its still easy to take it away and I stopped giving him bottles when he reached 1 year. By then I only had the "before bedtime" bottle left and it was quite easy to just quit it from one day to another. I just suddenly put him to bed without the bottle and it was fine :)

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