We had Elliott’s first cleft clinic today – we were supposed to attend in January, but canceled last minute when Elliott was up all night with a stomach bug the night before. This time around I was pushing the hand sanitizer and multivitamins and praying the germs away. And we made it!
I was positively buoyant going into the day – I was looking forward to plans! answers! professionals! It didn’t *quite* live up to my grandiose expectations, but all in all it was a good and helpful day.
Plastics & Oral Surgery:
Elliott had his lip and palate both repaired in China, which I consider to be such a blessing to us. I know a lot of people don’t want surgery on their kiddos over there (less control over the surgeon and standards, don’t want their kiddo suffering without them to comfort, etc), but we had hoped his palate would be done there in large part because developmentally that was the best time to repair it, but also because we didn’t want his first weeks of transition at home to be dominated by appointments preparing for surgery and then in recovery from major surgery. As it turns out, his palate had been repaired months before we ever saw his file!
Today at cleft clinic, the plastic surgeon was very impressed by his lip repair – and truly, it is beautiful. Very light scar line, the skin is smooth and even, his upper lip has a great shape. His nose is only a little uneven and since Elliott doesn’t have any issues with breathing/snoring, the plastic surgeon indicated that we could leave it up to him to decide to address when it bothers him down the road. Deal!
If there’s one thing Elliott hates, it is people looking inside his mouth. (Which I get – he’s had a lot of trauma happen in there!) So the plastic surgeon wasn’t able to get a good look at his palate, which at this point isn’t the end of the world. Since the palate consists of two parts, the hard palate and soft palate, I’ll address those separately:
- The hard palate repair is fine for now. We were concerned because he has a hole behind his teeth and one above his teeth on the front, but apparently that’s to be expected since there’s no bone backing up the muscle repair. They’ll start doing dental scans in early grade school, and when they see the eye tooth bud form we’ll start him on a palate expander (which sounds awful) – likely around age 7-8. That will help to widen the upper jaw to normal width and create room for a bone graft. When he’s 9-10, they will take some of his hip bone and graft it into his palate, which will help the jaw to keep proper shape as well as giving the permanent teeth bone to attach to as they descend. Apparently the timing of this is somewhat precise as a tooth bud without bone won’t descend, and a bone graft without a tooth bud to grow in and cement it will dissolve – they need both to work together. Crazy!
- The soft palate, the muscle on the roof of your mouth between the hard bony palate and your uvula, apparently plays a big part in how you produce sound. While the plastic surgeon wasn’t able to get a good look at it today, he said that really even more than how it looks, they focus on how well it functions. Some soft palate repairs look super thin and flappy but function perfectly, others look like they should work well but just don’t. It can impact a lot of sounds like G B D J Sh Ch, etc, as well as whether the sounds come out orally (normally) or nasally. We’ll have to see how Elliott’s speech develops over the next few years, and then they said that the earliest that they’d potentially make any soft palate adjustments surgically is age 4-5. But that’s only if needed, and we won’t know until we get closer.
And more down the road in the oral surgery front is potential jaw lengthening. Apparently all of these surgeries – the hard and soft palate repairs and bone grafting – can constrain the upper jaw’s growth. So the lower jaw will continue growing at a normal rate, but the upper jaw is restricted leading to a major underbite. (Or it may not impact it much at all!) As he gets into adolescence, we will have to see how that is developing and they’ll figure out a game plan.
Braces are a guarantee, but since neither the cleft team’s orthodontist or pediatric dentist were present today, we got no details on that. I’ll make an appointment to see the pediatric dentist soon just on general principle, because teeth need cleaning and I’ve heard some crazy stories about post-adoption dental care surprises.
We actually saw the ENT independently last month, but I’ll throw it in here. I took Elliott to our school district’s Early Intervention screening at the beginning of January where they did a routine audiology test and found that he has moderate-severe hearing loss and lots of ear fluid! Since he was sick for the cleft clinic a few days later, I asked the clinic coordinator who she recommended we see about his ears, and I was able to get an appointment with that doctor for mid-February. Her audiologist did another hearing test and tympanometric test and confirmed his hearing loss and that his ear drums basically aren’t moving because of the fluid built up in his middle ears.
We have an outpatient surgery scheduled for April 2 to have tubes put in, and because of the current hearing loss they will also do an ABR while he’s under general anesthesia. The ENT will suction out the middle ear fluid and insert the tubes (about 15 minutes grand total), and then the audiologist will run the 2 hour ABR – Auditory Brainstem Response. The audiologist hooks up some brain electrodes, glues on some fancy earbuds, and then will watch how Elliott’s brain responds to sound, which will give her a good baseline of his hearing level without the fluid present. Hopefully it’ll show that he has fantastic hearing, but if there is more going on and he needs something like hearing aids, we will find out that day! (Apparently for adults they can do ABRs without sedation, but since it’s a 2 hour test requiring you to be still and quiet … general anesthesia is definitely required for a 2 year old!!)
Because I thought it was a fun fact, the clinic’s general pediatrician said that they always ask if he has a history of ear infections when discussing the ear fluid and tubes because apparently the fluid associated with an ear infection should be cleared by about 2 weeks after the infection. Consequently, they want to look at the ears at least 3 weeks after an infection because if there’s fluid present that far after an ear infection, it tells them that the person is prone to fluid independent of ear infections and needs tubes for that reason. Fascinating! And to the best of our knowledge, Elliott has not had any ear infections since we’ve had him, and we have no record of them prior to his joining us.
Also, just for reference, apparently something like 90% of people with cleft palate need tubes at some point. The muscles that form the palate are related to the muscle regulating the Eustachian tube – which should be the natural drain for the middle ear. But in cleft palate affected people, that Eustachian tube muscle then doesn’t function properly and so fluid builds up. Children with cleft palates do often outgrow the need for tubes just like non-cleft kids, but it typically takes longer, with potentially several rounds of tubes required.
Coming out of our Early Intervention screening at the beginning of the year, we have been able to start at-home speech therapy free to us (funded by the school district) which is just amazing to me. We’ve had 3 sessions so far, at this point mostly focusing on signs to help him communicate since he can’t hear until his tubes are in. Our speech therapist is a recent grad in her first year working and with no experience with a kid with cleft palate, which obviously isn’t terrific, but the SLP we saw today said that as long as she’s willing to learn we should just see how the next few months play out.
The primary speech therapist for the clinic was out today (I was so sad!), but another experienced speech therapist from her practice was there. She was fantastic, so encouraged by Elliott’s vocalizations, that he uses sound so much to try to communicate, that he’s so engaged and interactive and watchful, that he tries to mimic the sounds you make, and that his sounds at this point appear to be very oral (which is good, as opposed to nasal). She was encouraging us to work more specifically on practicing the trickier palate sounds like B G etc. with him.
Because of his current sounds, the clinic SLP was very hopeful that his speech will take off after his tubes are in next month. Not that he’ll be speaking full legible sentences the next day, obviously, but rather that we should see major improvements even in the first two or three months after tubes are in.
I am PUMPED for words. Honestly even just with working more intentionally with signs with Elliott I have noticed him pairing specific sounds/tones with certain signs, and he’s begun impromptu requesting “help” or “more”. And he is a HUGE fan of the “potty” sign, which he’ll do as he pats the front of his diaper and says, “Muh, muh.” That’s typically his sound for “more”, so I’m not sure if he’s asking for “more diaper” or what. (Definitely not ready to potty train yet, but also definitely becoming very aware of whats going on down there.) Off topic! Signs are helping, but he so clearly HAS words he wants to be saying, and while if he turned out to be profoundly deaf and needed ASL as his primary language I would happily learn it for him, I don’t think that will be the case and I am super excited to hear his little thoughts in fully formed words someday.
I think I was maybe hoping for more concrete predictions and timelines on the down-the-road surgeries. But while we didn’t get anything firm, we did both gain a lot of knowledge about the whole process, and reassurance that as far as things go right now, Elliott is looking great. We will take it! As we were leaving, the professionals were sitting down together to discuss all of the kids they’d seen today, and we should receive a comprehensive write-up of their thoughts and recommendations soon. While the word today was a lot of “we’re good for now,” I am thankful that in the years to come, we have a team that will be ensuring that Elliott’s medical needs are being cared for across all fronts.