Cleft Team Appointment #3 & A Decision

September 19th, 2018

Our third and final consultation with cleft teams was validation that this proactive search in interviewing different hospitals and professionals within was well worth the extra time as it's clear that although all in the health care field and addressing the same issue, each place we visited and professionals we visited with were unique in their own way. In knowing the longevity and potential severity of care that my son will require, I was adamant in finding a competent team that not only possesses the exceptional skills required for cosmetic and functional repairs, but one that also provides me some emotional relief in being able to confidently hand over my child's life and quality of child and adolescent development to them for the next 18 years. While there is no way to make our decision based upon knowing the final outcome, we have to make an educated decision that is rooted from our conversations with them and the intuition in believing they will serve my son to this mama's standards [And if you haven't picked-up on it, they're pretty high. Sorry, not sorry].

Appointment with the nurse and surgeon:
Because there has been quite a lot of repetition at each of the three appointments, I'll jump to the standout differences at our consultation with Mayo.

1. Pre-surgical techniques are either the Latham Device or the NAM
1. The surgeon had to preference over which device we chose. 
2. The surgeon stated that research has not proven that one of the devices has better end results than the other
3. The NAM would require weekly trips for about 3 months 
4. The Latham Device would require an additional surgery in the early months, but then Derek and I would be able to tighten the screw from home. The Latham Device is only worn for 3-4 weeks. 
5. The surgeon also stated that we could choose to NOT do a pre-surgical technique and felt confident a good result could still be attained; however, it is far easier for him to perform the surgeries when a pre-surgical technique is utilized and there may be a less visible scar and/or less future repair surgeries when a pre-surgical technique is utilized. 
2. Cleft lip surgery can be as early as 3 months, not 4 as at both Sioux Falls and Iowa City
3. Cleft lip surgery can be performed as early as 10 weeks of age, but dependent upon pre-surgical technique and professional judgement on health of baby and pre-surgical technique status
4. Cleft palate surgery can be as early as they deem appropriate, but DEFINITELY before 12 months. 
1. He feels that this earlier window of palate surgery has shown to reduce speech complications
5.  He can use a needling technique to minimize scar visibility each or anytime that our kiddo will undergo surgery for something. 
6. He will be advised by the ENT of the cleft team at which surgery our kiddo should have tubes placed, either cleft lip or palate surgery, perhaps both. 
7. Follow-up care would consist of yearly appointments after 1 year of age that would be a full-day of appointments on a Wednesday and half of a day of Thursday in which our child would have numerous appointments with various professionals within the cleft team. After this, those professionals then meet around the same table to specifically discuss my child and find ways to coordinate care and services.
8. The surgeon typically sees 1-2 cleft cases per month (this is comparable to Sioux Falls, much less than Iowa City), but he does do 20-25 in India and 5-10 in Vietnam each year. So, this places Mayo right in the middle.

Natasha's takeaways:

• Easy commute. A little extra distance than Sioux Falls, but couldn't get much easier to get to. The drive to wherever will not only impact us, but we are also thinking of the kiddo in the backseat and the time spent in a carseat. 
• Like Iowa City, it's a cleft TEAM
• While different, Mayo's timeline for surgeries and interventions throughout development are very comparable to Iowa City's
• The surgeon was very personable and came across knowledgeable, skilled and confident in his abilities, but is a general plastic surgeon unlike the specialty focus of Iowa City's 

Derek's takeaways:

• Believes they are just as qualified as Iowa City
• Believes that in all actuality the closer convenience will ultimately provide better care. His reasoning that if we were to doctor in Iowa City we would be more likely to question 1) should we drive all the way? 2) maybe we skip the next appointment if it's not that pressing? *I don't think we would ever do this...edit: I know that I would never do this...but this a big enough concern for Derek that it made his bullets [insert eye roll]

And so the decision is Mayo's Cleft and Craniofacial Clinic! It would have been a more difficult decision and certainly more of a debate between Derek and I if the distances to Iowa City and to Rochester were equal, but at the end of the day, we're confident that the anticipated outcome of Mayo's care will be comparable to that of Iowa's City's.

Up next: I have a growth and fetal wellbeing scan next week which I anticipate to be the last ultrasound and snapshot of our lil' man until the big day, so your thoughts and prayers are appreciated that we hear good news at this upcoming appointment. Much thanks <3