Cleft Team Appointment #2

September 10th, 2018

Doctoring at the University of Iowa was the first suggestion we received after the diagnosis and continued to be brought up in conversations with other family, friends and strangers since. While the nearly 5 hour drive sounds miserable enough to discount it from being a viable option, we just weren't able to cross it off our list of options due to the mass referrals we were receiving. Which brings me to breaking down our consultation appointment with their cleft team below.

Appointment with the nurse:

Well, I pretty much fell in love with this woman. She was genuine, kind, knowledgable, informative and to top it off, she is a cleft mama herself! She initiated our cleft team appointment and covered much of the same information that was covered at our first cleft team appointment, but it was nice to get a review of what to expect with birth and baby. 

• She discussed the bottle options with more detail and provided a bit more of a pro/con listing to go along with each, but ultimately the bottle selection will be 100% up to baby and his ability to feed. So, we wait. 
• She informed us that the initial appointment would have to be within the first 1-2 weeks of birth. The initial appointment would then leave us with a created action plan for our next steps going forward. Once again, nearly everything is up in the air until birth when first-hand observations and evaluations can be performed. So, we wait. 
• She informed us that the Cleft Clinic runs every Monday, whereas all of the professions who are part of the cleft team (speech pathology, orthodontics, plastic surgery, pediatrician, audiologist, etc.) come to the same location to allow for children with clefts to be seen by all necessary providers without multiple appointments at multiple locations. 
• She informed us that they see about 60 cleft cases a year. (This is about 5x more exposure than Sioux Falls)
• She informed us of two pre-surgical techniques, taping and the NAM. 
• Taping would be less travel than NAM utilization 
• NAM would require weekly visits to the clinic for remodeling of the device
• The timeline of surgeries was pretty similar to that which was laid-out at our first cleft team appointment, but with added details and possible future surgeries.
• Cleft lip surgery with ear tubes (most likely): 4-6 months
• Cleft palate surgery: 9-18 months, 12 months preferred 
• Bone graft: 5-7 years of age
• Jaw surgery (1/5 chance): 16-18 years of age
• Lip/palate revisions a possibility throughout development as needed/desired

Appointment with the surgeon: 

Derek initiated the conversation with the surgeon by noting that we were in the process of interviewing cleft teams to decide where to ultimately doctor. The doctor took this information in and then said that he would then be approaching our time with him in the way that he would want it should the tables be turned. No surprise then that our time with this surgeon was very educational,  providing us with thorough details of old and new surgical methods and techniques that he is not only knowledgeable of, but skilled in as well and we learned proper names to the entire anatomy impacted by cleft lips and palates. 

After looking at our ultrasound pictures that I came prepared to show him, he listed two pre-surgical techniques as options, but a different listing that the nurse originally provided. He didn't mention the taping option, but did reiterate the NAM and informed us of lip adhesion. My anxiety-spawned interpretation makes me wonder if he feels pretty confident that our kiddo has a wider versus narrow cleft and therefore needs more intensive methods and that's why taping wasn't mentioned? 

• He feels as though both methods give pretty similar results in the end
• He did indicate that he prefers the NAM slightly over the lip adhesion, but not with much reasoning to back-up his preference other than the bullet below
• Lip adhesion would require a lip surgery at 3 months and another lip surgery at 6 months; thus, two events of putting the baby under anesthesia 
• Lip adhesion would be far more convenient for families (AKA: us) who live far distances away whereas the NAM travel requirements would be a hinderance.

In asking about the amount of his plastic surgery work being cleft related, he said that he is doing a cleft-related surgery on a weekly, bi-weekly basis. All other surgery work is specifically for other facial deformities. He referenced attending cleft conferences, reading cleft articles and staying informed of new procedures/methods/techniques and the data to support each one, professional networking, etc. which leads me to believe he is good, damn good. 

He did understand the distance between Home and the University of Iowa Hospitals, so did make several comments about the option of finding closer professionals. He didn't guilt us into choosing the U of I to care for our child, no pressure or boastfulness to their services, but did leave us with the importance that we choose a TEAM atmosphere and not singleton professionals. The perk of the Team is not only helpful for children with cleft and their families, but for the professionals involved as well! 

My takeaways:

• It's a cleft TEAM
• It's a 'one-stop shop' of professionals
• The surgeon came across very knowledgeable, very skilled and very comfortable in placing my child in his hands. 
• I appreciated their honesty. I felt as though our first cleft team appointment sugar coated the diagnosis and all that it entailed, only providing us with best case scenarios versus this appointment which gave us the wide range of possibilities of care for child with a cleft. 
• This is their speciality. They do it, they do it often and they have rave reviews for their performance. 
• It's sooooooo far away and weekly appointments to Iowa City would require a tremendous commitment anytime, but especially come the winter months. 

Derek's takeaways: 

• Hands down, they're probably the best qualified to do the best job
• It's so dang far away and is the most inconvenient option 
• Their preferred approach (NAM) is going to cause the most trips 
• Frustrated that neither the nurse or the surgeon was able to really explain the NAM, how it works and its benefits over other options. They prefer it, but didn't feel like they could really explain why they prefer it. 
• And leave it up to Derek to tell me his last bullet point is......"It's Iowa City" (ISU fan can't seem to let that one go) 

Next week is Cleft Team Appointment #3 at the Mayo Clinic. I am anxious for our final consultation appointment and to finally be able to make a decision of where our little man will doctor for the next 18 years of his life. Stay tuned!