Let the Taping Begin

(First of all, right off the bat, i want to tell you guys that despite Henry's uncomfortable appearance in these pictures, he is indeed not in a ton of PAIN. He was unhappy with the fact that i had to do what i did, but that lasted all of 17 seconds and then he went back to his chill self.)

We have started taping Henry's nubbin in an effort to bring it closer to his face and mouth in preparation for his cleft lip surgery. The idea being that the closer it is to his face, the easier the repair will be and the less of a scar, assuming the skin does not have to 'stretch' as far to pull it all together.

A couple of explanations and clarifications here are helpful, especially for those curious about the details.

We met with Dr. Jeffrey Karp in Rochester last week. He studied Henry and his cleft situation and presented basically three options, or 'paths' that we could take. It's worth mentioning that at Henry's age, which is considered 'late' in beginning preparation for repair (Dr. Karp likes to start working with children as early as 1 or 2 weeks old, and as we all know, this was impossible with Henry), it could be very difficult to PREPARE his nubbin due to the rigidity that has set in. Newborns ears are like paper, floppy and pliable (which i've always marveled at with my kids at birth), and their palates are similar in nature, thus the desire to begin training early in that area. The longer it has to set in, the harder it gets. Dr. Karp said that Henry's nubbin was very hard and there is a good possibility that no matter what route we take to prep it for surgery, it may not take.

The three options, in order from least invasive, are: taping, molding and lip adhesion.

Taping: This is the option we picked and is what we are doing in these pics. We have chosen taping because it does not require any surgery (thus anesthesia) and is relatively painless (despite Henry's look). I lay down a protective tape called Duoderm (not in these pics, which i did later), in little 'football non-glare' strips under his eyes, and then lay the steri-strip tape (shown) on top of that. The Duoderm protects his skin from the badgering of sticking and removing tape all the time. The rubber bands act as a tension system to stretch and pull down Hank's nubbin closer to his face, more into his mouth, where it should be (his 2 front teeth buds are in this nubbin). And in theory, this slight pressure will work its magic to bring everything in, which will make surgery a little easier. This whole process can take months. We are not sure about Henry and his progression, but we are keeping in touch with Dr. Karp via phone and photos sent via email and will go from there. Just last night i sent him an email with the two pics of Henry here, and he called me right back (10 pm at night!) to tell me that i get an A+ for placement as well as the photos taken. He mentioned just putting his kids to bed and having time to call me. I really like this doc! I'm impressed with his personal attention to Henry.

Molding: Molding (or Nasal Alveolar Molding, or NAM) is like a little mini retainer for his nubbin/mouth. An appliance is made out of plastic to hold his nubbin in the front and his gums on the side. Also, two little nasal 'bulbs' are in the front for shaping purposes. Rubber bands and taping are needed as well for this process (see pic) to make it all do what basically taping does. The reason we did not choose this route, while often successful and 'faster' than taping, is because the appliance, just like a retainer (did you guys have one? I did!), or dentures, can rub and cause ulcers and sores in the mouth, which can easily and readily lead to infection. Henry, specifically, is particularly prone to infections (as his cardiologist has noted) and we do not want to create such a situation, sending him back to CHOP with dangerous bradycardias and more IV antibiotics. No thank you. No brainer on this one to say NO. Another deterant on this option is time-consumption. It needs frequent adjusting by a pediatric dentist (in Rochester) and attention by mom and dad at home. I was unapologetic in admitting that I cannot dedicate this kind of time to this option. I know my limits, and responsibilities with also Sam and Thom, and did not choose to even try this.

Lip Adhesion: This is the most successful of prepatory options, but also the most invasive. It requires surgery and anesthesia. It is a 'messy' surgery that stitches the lips up to the premaxilla (or 'nubbin') and the pressure from being stitched together brings everything in/down. This one is almost a no-brainer at working, but when given the option to tape first (which we are not wasting our time with, given the various scheduling times involved, for all (docs and us)) or dive right into surgery, taping seemed like a good step. Dr. Karp, however, made it very clear, not at all to our amazement, that taping might very well NOT work, at this late stage in the game, in which case we'd do lip adhesion. I am comfortable with this. But taping can't hurt to try while we're waiting for further meetings and surgery times.


So there you have it.

It might be worth noting here, without too much hoopla, my slight disappointment with CHOP on this issue. I only briefly (if at all?) touched upon our NOT using CHOP for his cleft repair. The initial thought was to indeed get his repair at CHOP. I tried various times (and on various visits!) to meet with the cleft team for a consult, and was continuously unsuccessful. The nurses would page the team, and they would get no reply. One week, i made it my mission to have them page the cleft team at least every other day, and that also provided zero success. Then, one day, Hank's cardiac nurse said, in a befuddled and unsure tone, "Um... the cleft team called and said we could go ahead and start taping him. Um... i really don't know what that means. Do you?" Well i did INDEED know what that meant from doing online research and was LIVID (at the time; i do not hold grudges) that such a vague, hands-off approach and phone call were made. No one ever came to LOOK at Henry, how could they effectively and professionally suggest a method of correction? And based on that phone call, i was more pushy for a follow-up and consult and still got none. I had then, since, talked to several other folks about the cleft team and they had nothing but negative things to say, so it only solidified my gut instinct to wait and go to Rochester for repair.

Then, on one visit, i miraculously and FINALLY got a consult with a cleft resident, a very professional woman who was flabbergasted by my above story of the mysterious phone call. I got down to brass tacks, told her my frustration and disatisfaction and was merely seeking an opinion, at this point, of Rochester's team. She had glowing praises and reassured me that their team was second, if not equal to, NYU's and theirs.

My point in telling this story: Because i had researched taping online and the CHOP cleft team had given this crazy 'go-ahead' to tape, I had all the resources and ability to begin the process at the appropriate age for it to work. We're talking at least 3-4 months ago. If this had happened NOW to me, but back then (meaning, where i'm at comfort- and confidence-wise with my care of Henry), I *WOULD* have begun taping him on my own, while he laid in that cardiac hospital bed getting IV antibiotics and not much else except biding time. It's slightly disheartening, but not the end of the world. I can only say "bygones" to such a missed opportunity and will hope that whatever is done now will work, and will work safely and effectively.

So - Little Hank is getting prepped for a big surgery in my book. While cosmetic in nature, just putting him under to do it is something not to be taken lightly for Henry. And then there's the healing, of course. There's also the gigantic Getting Used To A New Little Face All Over Again thing, but I'm sure that will happen naturally and happily, like much does in this family. We are talking months down the line i think, and of course I'll be sure to post any updates as they develop. In the meantime, i have to figure out a way to keep his hands from interfering with the tape and little rubber band loops, something that would be a non-issue with an inactive 2 week old. :-)