October 15, 2018
A few weeks ago I was scrolling Cleft Mom Support (aka, the BEST online support group for cleft mamas EVER) and came across a post from a mama requesting referrals for cleft teams in the Minneapolis area. I was interested in reading the responses and in doing so, read one mom's post stating that she resided dead in the middle between Minneapolis and Sioux Falls and they chose Sioux Falls. My interest level spiked high, Sioux Falls over Minneapolis? How is that possible after our less than exciting consultation with Sioux Falls? Come to find out, they doctor at Sanford Health in Sioux Falls (we had consulted Avera Health), Sanford has a American Cleft Palate Association (ACPA) approved cleft them and they (as well as other cleft mamas who chimed in the thread) LOVE Sanford's team and their experiences thus far. What the crap? How did I miss this information? Why did I never inquire about other hospitals in Sioux Falls when we first began our consultation there back in August? I can't answer these questions, but I'm grateful for my Facebook surfing time the day that this post made me aware that our search for a cleft team simply can't be complete without considering all viable options.
.....So, that brings me to my appointment at Sanford's Cleft Lip and Palate Clinic today.
A few weeks ago I was scrolling Cleft Mom Support (aka, the BEST online support group for cleft mamas EVER) and came across a post from a mama requesting referrals for cleft teams in the Minneapolis area. I was interested in reading the responses and in doing so, read one mom's post stating that she resided dead in the middle between Minneapolis and Sioux Falls and they chose Sioux Falls. My interest level spiked high, Sioux Falls over Minneapolis? How is that possible after our less than exciting consultation with Sioux Falls? Come to find out, they doctor at Sanford Health in Sioux Falls (we had consulted Avera Health), Sanford has a American Cleft Palate Association (ACPA) approved cleft them and they (as well as other cleft mamas who chimed in the thread) LOVE Sanford's team and their experiences thus far. What the crap? How did I miss this information? Why did I never inquire about other hospitals in Sioux Falls when we first began our consultation there back in August? I can't answer these questions, but I'm grateful for my Facebook surfing time the day that this post made me aware that our search for a cleft team simply can't be complete without considering all viable options.
.....So, that brings me to my appointment at Sanford's Cleft Lip and Palate Clinic today.
- Sanford Cleft Lip and Palate Clinic is within Sanford Children's Hospital. Not that this is a make or break it, but I surely appreciate the pediatric focus that both U of Iowa and Sanford would have.
- Dr. Munson is a younger doctor, but did his residency in Mayo's Otolaryngology - Head & Neck Surgery and pursued a fellowship experience in pediatric otolayngology and cleft surgeries in Arkansas thereafter. He has been director of Sanford's cleft team for the last 8 years.
- He said they see 20-30 cleft patients per year. This puts Sanford in the middle of our consults, ahead of Avera and Mayo and behind U of Iowa.
- There cleft team would require a one-day visit during the infancy ages and a Thursday afternoon + Friday morning after a few years of age. The professionals would all be in one location for ease and convenience for us. (This is a similar protocol to U of Iowa, Mayo would require us to bounce around to different departments). The professionals then meet together in one space to discuss results and coordinate suggested next steps.
- In asking about our first consultation after birth, Dr. Munson said that he would either come to Avera to evaluate our little guy while still in the hospital, we could send him a picture and he could evaluate via a distance or we could schedule a visit at his office sometime after discharge. He strongly expressed his willingness to visit Avera, THAT can't get much easier.
- In asking about pre-surgical techniques, he said that if it is a wide cleft (nothing would be advised if the cleft width is on the small side) he felt that the use of a pre-surgical technique in leads to a better cosmetic result throughout childhood, adolescence and ultimately adulthood. For wide cleft circumstances, he offers taping, can refer us to a team in the cities for NAM use or lip adhesion.
- He explained that the taping, while effective, often leaves parents frustrated with the constant taping that often gets negatively effected by drool and eating and that the child may suffer from the irritation that the constant on/off taping could cause (I had read this in various parent groups as well and appreciated his honesty instead of sugar coating hell).
- He doesn't personally utilize the NAM and had similar thoughts to its use (e.g. MAJOR time commitment and diligence by parents and potential irritation and frustration by the child), but offered a referral and joint care in the Minneapolis area for parents who strongly request the NAM.
- His preference and one that he said most families opt to do is the lip adhesion procedure. (U of Iowa also offered this, but Mayo did not) He advised doing the lip adhesion, a minor 30 minute surgery, around 1 month of age with traditional lip repair surgery taking place 3-4 months afterwards. (this is quicker timeline that U of Iowa's protocol with lip adhesion)
- Cleft palate surgery would be advised between 10-12 months. This puts Sanford's suggested timeline right in the middle of Mayo (progressive) and U of Iowa (conservative).
- His advice on timeline for ear tube placement was interesting and a new response for us. He said that placing tubes early can actually have a counter-effect on hearing and subsequent complications with tubes, infections, etc. He suggested placing tubes at the cleft palate surgery time and should the babe fail his newborn hearing screening, that other testing be done to evaluate reasons why and intervene appropriately according to results.
- Out of all the consultation appointments and conversations with surgeons we've had, I felt most comfortable with Dr. Munson.
My only questions are in regards to future potential cosmetic procedures in the future, would he do those 'plastic' surgeries or would he refer to a general plastic surgeon or who he as our otolaryngology surgeon do those? I will have to send them an email and ask (emailing was another added convenience that U of Iowa offered as well and I sure Mayo does to (or should), but they didn't openly share that with me).
All in all, I felt like Sanford's Cleft Lip and Palate Team consult was like baby bear in Goldilocks and the Three Bears - there wasn't too much of one thing, wasn't too little of anything, kinda just right.
I'm taking back our once stated commitment to doctor with Mayo and will reserve making a final decision until we have to (birth) as I want to thoroughly think through all of these wonderful options we have at-hand and decide which one is simply going to be in the best interest of our little one and our family.