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What to Expect with a Cleft

Hearing the words that your baby has a “Cleft” can be a scary thing, especially when you have no knowledge of what a Cleft Lip and/or Cleft Palate is. It can be a difficult time coming to terms for most families. Here I have of what to expect with a cleft baby. Majority of this information is from some experience, and research. Now I am not a doctor or an expert these are just of what I know. Below you will see a few links that will be of good resource but my suggestion is you ask your doctors directly. Every doctor is different and plus I am in the islands and everywhere, every state does have their own ways of practice.

Feeding

Cleft can sometimes make it difficult to feed little ones. With Kaison, he was not eating properly. He was aspirating (fluid going into lungs and not stomach) so, the doctors decided to give him a G-tube (feeding tube inserted into the stomach). Hopefully you won’t have to go through that experience. For cleft palate they do recommend special nipples designed specifically for cleft palates. Kaison used the “Haberman” before the G-tube and as for Kylan he was given the “Pigeon.” I loved that nipple. It worked really well. If you are wondering, no Kylan did not need a feeding tube. Surprisingly he ate pretty well. Now with the special nipples I am not sure how it is in other state’s but in our state Hawaii. We were able to have our bottles covered with our medical. Try looking into getting help with getting your little one with a special nipple for them.

Breastfeeding

Since we are on the topic of feeding. Breastfeeding may be more complicated than if you were to feed a baby with a normal palate. You might need to pump instead of feeding by breast. Some babies are different. I was told by a few that it may be more difficult for Kylan to latch and he will be working more than any other infant. He did latch on good, but he did get tired quick. So I did mostly pumped. I fed Kylan breast milk exclusively for about 2 months ( a lot longer than my other two) and then I gave him both breast and formula till 6 months I decided to stop. I found myself struggling to balance daily life along with pumping. To me it would’ve been a little easier if I could just latch him on.

Hearing

Your little one may not be able to pass their hearing test and at most times it is quite normal and not as alarming to doctors as you think. From my understanding there is 3 types of deafness.

  1. Glue ear deafness– is the most common in children with cleft palate. It is when sound cannot pass through the outer and middle ear to the inner ear. Glue ear is sticky fluid in the middle ear, it can cause frequent ear infections and it can cause a mild to moderate deafness. Children without cleft palate may also have the condition “Glue ear.” But for them it is temporary and they most likely out grow because at around 8 years olds the Eustachian tube and other cavities grow larger. For children with cleft palate the Eustachian tube may be abnormal and the muscles may not work as well. Ear tubes might be recommended by an ENT ( Ear, Nose and Throat doctor). What are ear tubes and how does it work? Grommet (ear tubes) is a tiny tube that is inserted into the ear it helps to drain fluid (the sticky fluid that builds up in the middle ear) in the middle ear and helps maintain the pressure. Both of my boys had these placed in and I still have mine still in my ear till now. The procedure was pretty quick and it went well for us. Quick note, your little one may find sounds a lot louder than used to. With Kylan the second day after his procedure we were finally at home and were going to bed. Everything was going well till he discovered this odd sound coming from his daddy’s mouth as he slept. It was his SNORE that Kylan was taken by surprise. I always thought he could hear it, lucky him he had a good nights rest until now….
  2. Sensorineural deafness– Hearing loss caused by damage to inner ear or to the nerve from the ear to the brain. This is unusual in children with cleft palate. To my knowledge if it were to happen it’d be due to an associated syndrome, or a co-existing condition.
  3. Mixed deafness– children who have conductive deafness like glue ear also have sensorineural deafness.

Here is a link to a website I feel can best explain this a lot better than I can http://www.ndcs.org.uk/family_support/childhood_deafness/causes_of_deafness/cleft_palate.html

Speech

When it comes to speech our palate is a big contributor. For little ones with cleft palate it is a lot more difficult pronouncing words. The hearing also comes into play with speech. If a little one has “glue ear” then they are most likely going to have a harder time with speech as well. That is why the ear tubes (Grommet) are great for glue ear. Imagine riding in a car on the highway going about 45 mph and all of the windows are down. Try having a conversation with someone, I am pretty sure you won’t be able to hear very well. That is how it is with glue ear and when you can’t hear, you can’t hear yourself speaking either which will make it more difficult to make out sounds. With Cleft Palate being an impact on speech it can be overwhelming for the little one and for the parents. That’s where ASL (American Sign Language) comes into play and I encourage all of you to use it as a bridge for communication. I will have a post coming up going over it a little and showing just the basic signs to help with you and your little ones.

Multiple Surgeries

Unfortunately with Cleft lip and Cleft Palate surgery is necessary. It’s a roller coaster ride along with quite a few sleepless nights I ain’t gonna lie. It can be very exhausting but trust me when I say it, it’s all worth it. Technology has come a long way. From my moms time to now my children’s time things has changed a lot and there are different techniques. Living in Oregon Kaison was being followed by the Cleft Team at Doernbecher Children’s Hospital. The staff there are awesome I love them and how they took such good care of us while we were there. They used a technique called the NAM (Nasoalveolar Molding) here is a link of where you can read up more on it http://www.stlouischildrens.org/our-services/cleft-palate-and-craniofacial-institute/nasoalveolar-molding-nam  It is a wonderful device, it is a little scary when you first see it but I think it’s amazing! Within the first week of your little one being born he/she will be fitted for a molding. To get great results the NAM needs to worn at all times. We never really got to get the whole experience because Kapiolani Children’s Hospital does not use that device they do only taping. Only because there are a lot of patients that does not live on Oahu and with the NAM you’d have to fly over every week for constant up keep. So instead here in the islands we just do taping. Which is kind of the same point. They basically want to try to streth and bring the upper lip as close together as they can before they do the lip repair. The other difference with the “NAM” and just “Taping” is the timing of the first surgery. With the NAM it can hold off the lip repair surgery off till baby about 6 months for Bilateral Cleft lip and 3 months for unilateral Cleft lip. It all depends on your little one and what your doctor suggests. Here in the islands the lip repair is usually around 2-3 months old. Then of course after the lip repair there is the “Palate repair.” Feeding after the Palate repair is a little hard. I will make a post going over the aftermath of Palate repair. I can’t really give you an exact number of how many surgeries to expect because every case is different.

Age Surgery
1-4 months old Cleft lip Repair
5-15 months old Cleft Palate Repair
2- 5 years old Lip/Nose revision
6-11 years old Alveolar Bone graft
12-21 years old Jaw surgery Rhinoplasty

This table does not include the surgeries needed to place tubes in the ear to help with “Glue ear.” I recommend you to click this link CriticalElementsofCare-CleftLipandPalate[397].  It can be very helpful with giving you information on what to expect and more detail with the surgeries. I was able to get this from a wonderful Nurse at Kapi’olani Women’s and Children’s Hospital.

Orthodontic Work

The upper jaw can be compromised with Cleft palate. That’s where Orthodontic’s braces comes into play. Braces can be a bit expensive. I am not sure how it is in other states. In Hawaii Medicaid covers all Orthodontic for Cleft. Braces are needed due to the birth defect, it’s not for cosmetics. I used be to under my parents medical which was a private insurance. My parents was advised by the insurance company that if worded right in the billing paper work the braces are needed for birth defect and not cosmetics it would be covered. I was not able to complete the whole process but I will soon share with you folks my journey on that. Check if your private inseurance can work with coverage for a birth. Because I know braces can be pretty pricey.

Genetic counseling

If you are like me and have many questions such as, “how did your child get a cleft” or “is it hereditary in your family”. Genetic counseling would be helpful for you and your family. It puts our minds at ease to know. Because of Genetic counseling my family and I now know that my brothers will not have a child with Cleft neither will our middle son Mikel. As for Kaison and Kylan they are likely to pass the gene on and I am most likely to have another child with cleft. It’s just a flip of a coin of us

Counseling

Last but not least is counseling. For some having cleft can be difficult, accepting being different and dealing with others reaction can be hard. I can understand because Cleft lip is not something you can hide. It’s right there in the center of our faces and it can affect speech as well. Counseling is a great way to know how your child feels and helps them to learn how to express themselves. Feeling different can bring us to a lonely place and we don’t want that for our children. Counseling would be great for their self confidence.

Well that pretty much sums everything up. Keep in mind you are not in this alone and it’s okay to cry and feel upset. The first year is always the toughest don’t be too hard on yourself. It’ll get better.

Keep smiling & have a blessed day!!
xoxo

 

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