Hear From Our Patients & Families
Real Stories. Meaningful Journeys.
Every cleft and craniofacial journey is unique. Explore real stories from patients and families who have trusted Midwest Cleft & Craniofacial Specialists for expert, compassionate care. Learn about their experiences, treatments, challenges, and milestones—and see how personalized support can make a meaningful difference throughout every stage of care.
A Family’s Journey With PRS
Briggs’ journey with Midwest Cleft & Craniofacial Specialists began on his first day of life following a diagnosis of Pierre Robin Sequence. Through surgeries, feeding challenges, and ongoing care, his family found reassurance in a team that has supported them every step of the way.
Can you briefly describe your or your child’s diagnosis and when you began care with Midwest Cleft & Craniofacial Specialists?
Briggs was diagnosed with Pierre Robin Sequence at birth. Pierre Robin Sequence (PRS) is a congenital condition characterized by a small lower jaw (micrognathia), backward displacement of the tongue (glossoptosis) causing airway obstruction, and a cleft palate. Briggs was delivered at Centerpoint Medical Center in Independence, MO, but it was quickly determined by the team there that he needed to be transferred to Overland Park Regional Medical Center so that he could be under the care of the Cleft and Craniofacial Team and determine if and when he would need surgery. Within his first day of life, he was flown by the NICU Flight Team to Overland Park, where we began our journey with Dr. Christopher and Dr. Weiss (on his first official day in KC).
What were your biggest concerns or questions before starting treatment with our team?
As first-time parents, we were already super nervous. Then to find out our baby had an unknown birth defect and needed to be transported 40 minutes away from home and was facing multiple surgeries, we were in shock and terrified of the unknown. When he was transported to OPRMC, we were immediately discharged so that we could go and be with him. By 6:00 pm that evening, we had met with Dr. Christopher in the NICU, and he explained Briggs’ diagnosis and what the first year of his life would look like with surgeries, etc. Meeting Dr. Christopher and seeing him with our new baby and his calm explanation of everything put our hearts and minds at ease as we began our journey.
How would you describe your overall experience with Midwest Cleft & Craniofacial Specialists?
We cannot say enough amazing things about the amazing team that has been built within Midwest Cleft and Craniofacial Specialists. It truly is a TEAM of people who have come together to best help support families in one of the scariest/unknown times of their lives and continue to be a part of our lives even after the “hard part”.
What aspects of your care with our team stood out most to you?
The fact that Dr. Christopher has always just been a phone call away for us. You hear horror stories of families dealing with issues and not being able to get a hold of a doctor. When Briggs was struggling with an infection in his distraction device, Dr. Christopher made time for him in his oral surgery clinic to monitor and treat the infection. We have never felt isolated or on an island in dealing with anything PRS-related. I love the connection that we have been able to make with other families dealing with similar diagnosis. Being able to talk to each other and check in and have someone else who truly understands what life looks like is such a blessing!
How did our team support you and your family throughout the process (before, during, and after treatment)?
It is truly amazing to me to think that Dr. Christopher, Dr. Weiss, and Rachel our team SLP, have all been with us essentially since Briggs’ birthday three years ago! Feeding a baby with PRS and a cleft palate is not an easy feat, and Rachel and the NICU SLP’s worked with us, teaching and learning alongside us as we figured out the best feeding system, positions, etc., with Briggs. Now, as he is older, they have helped monitor and guide his Speech and Language development and helped advocate for him as we transition to an Early Childhood Education Program.
Can you share a moment or interaction with our team that felt especially meaningful or reassuring?
When we found out that Briggs was going to have to be flown to OPRMC for care, we were so scared. The neonatologist assured us that the Cleft and Craniofacial team were the best, but you just don’t know what to expect. I fully expected for some old gruff surgeon to walk into our room when we arrived in the NICU and tell us that he was going to “fix our baby” and that would be that.
Upon meeting Dr. Christopher and seeing the true love and care he had for our tiny little baby when they first met instantly put my heart at ease. He took us to a conference room and explained exactly what the first year of surgeries and care would look like… and that’s exactly what happened. We are forever thankful for him and his love and care for our son, and he’s forever a part of our family and story.
How has treatment with Midwest Cleft & Craniofacial Specialists impacted your child’s (or your) confidence, daily life, or overall well-being?
Thanks to Midwest Cleft & Craniofacial Specialists, we have a thriving almost three-year-old who is wicked smart, silly, and loves to see his favorite doctors! Unless you knew what he’d been through, you’d never guess!
What would you say to another family just beginning this journey or deciding where to seek care?
You are right where you belong. You have an amazing team of doctors and therapists on your side who will do anything and everything they can to help your child thrive and grow.
Palate Expansion & Bone Graft Care
After years of cleft care, Rayne’s family found a team that made them feel heard, supported, and truly at home. Today, Rayne is embracing her story with confidence and inspiring others along the way.
Can you briefly describe your or your child’s diagnosis and when you began care with Midwest Cleft & Craniofacial Specialists?
My daughter, Rayne, was born with a Left Complete Unilateral Cleft Lip and Palate. When my daughter began care with Dr. Robert Weiss, we were past the recommended timeframe to get my daughter’s palate expander and bone graft completed. She should have had it done when she was 8, and she had just turned 10 years old when we found Dr. Weiss. She had already undergone 6 surgeries, 5 of which were from Dr. Ernesto Ruas with All Children’s – St. Petersburg, FL. When we found Dr. Weiss, it was truly a bittersweet, revolving moment. When I saw his picture and biography, the lightbulb in my head went off. We had previously met him when she was younger. He had been doing his fellowship when we lived in Florida, and he had been involved in her cleft team down there.
What were your biggest concerns or questions before starting treatment with our team?
Some of our biggest concerns and questions stemmed from what a previous Craniofacial Team had told us her treatment plan would be. Their treatment plan just did not sit right with me, and we were pushed off multiple times. When we met, Dr. Weiss was warm, informative, caring, confident, and supportive of her next journey. He took new scans and comfortably reviewed his treatment plan for her with us, and I was in disbelief. She needed her palate expander treatment for roughly a month, with every night turning the device to widen her palate. She had a month to recover, and then we returned for more information about her upcoming bone graft surgery. She was very nervous, as we had heard it was a painful and long process, so we asked as many questions as we could. What surgical route are you taking? What is recovery time like? What will her diet restrictions be? What is the most crucial part of her recovery process? Will her expander be removed during surgery or will it stay in place? What helps make your decision in the surgical route of harvesting her own bone or using another method? I had so many more questions, and Rayne has always been completely informed of what her next journey will entail. She had a bunch of fun questions for Dr. Weiss too. Her biggest concern and question being, “Can I still eat ramen noodles and croissants?”
How would you describe your overall experience with Midwest Cleft & Craniofacial Specialists? What aspects of your care with our team stood out most to you? How did our team support you and your family throughout the process (before, during, and after treatment)?
I would describe our overall experience with the Midwest Cleft & Craniofacial Specialists team as being like family. They truly make you feel understood and involved in all aspects of the team and care. I couldn’t believe it when Dr. Weiss handed me his personal phone number. He was contacting me consistently after her surgery and made sure she was doing well. He checks in with us consistently and has even attended her elementary school’s Career Day and provided so much insightful information about what he does to so many students. It is truly like being part of a family. You can see the passion he puts into his career and how much it shines. I couldn’t imagine my daughter having any other surgeon at this point.
If you explored or received care elsewhere, what differences did you notice with Midwest Cleft & Craniofacial Specialists?
Rayne has been with two other cleft teams previously. Her first team was in Florida, and we were with them for 8 years. They were genuinely amazing, and it was really hard to leave. I wanted the same level of care for her that we received there. When we moved to Missouri, we started with another cleft team that turned out to be really disappointing, and they would let patients slip through the cracks. Rayne became part of the majority that would slip through the cracks or be held back from treatment because of finances. Midwest Cleft & Craniofacial Specialists became the team that superseded my expectations of her original team. They truly make you feel like family, never let their patients fall through the cracks, have enough passion for a lifetime, and make sure patient care is number one. They make you aware of the entire treatment plan and don’t let finances get in the way of treatment.
In your view, what makes Midwest Cleft & Craniofacial Specialists unique compared to other programs?
Their passion, demeanor, and care shines the brightest and most uniquely in all the teams I have met.
Can you share a moment or interaction with our team that felt especially meaningful or reassuring? How has treatment with Midwest Cleft & Craniofacial Specialists
Craniofacial Specialists impacted your child’s (or your) confidence, daily life, or overall well-being?
Rayne invited Dr. Weiss to her school’s AVID Career Day. The moment he texted me saying he would be there and that he moved around his schedule to accommodate, with two days’ notice, was the moment I knew for sure the amount of passion he had for these kids. It meant the world to her, and she has raved about it ever since. It gave her the confidence she needed to embrace who she was and be able to openly speak about herself in a way that I never imagined I would hear. She has now since wanted to openly advocate for Cleft kids.
What would you say to another family just beginning this journey or deciding where to seek care?
I would tell them that they will never find a team that fights so passionately for these kids. They make them feel like family and see them no differently. I couldn’t imagine where we would be without Dr. Weiss and his team. They don’t care financially where you stand as long as your child is getting the necessary treatment and care to give them the quality of life they deserve. “Every child is different in their own unique way, and Cleft kids are just kids too.” Those were words Dr. Weiss spoke at my daughter’s career day, and I will never forget him making her feel like a normal kid.
Bilateral Cleft Lip & Palate Care
From prenatal guidance through cleft lip repair and recovery, this family found education, reassurance, and ongoing support from a team they trusted to care for their child every step of the way.
Can you briefly describe your or your child’s diagnosis and when you began care with Midwest Cleft & Craniofacial Specialists?
Kross was born with a bilateral cleft lip and palate. We began care shortly after our 20-week anatomy scan, where Kross’s cleft was seen on ultrasound. Getting to know the team while still pregnant was pivotal for boosting our confidence as cleft parents before his arrival.
What were your biggest concerns or questions before starting treatment with our team?
Our biggest concern was our lack of education and community, as we didn’t know anyone who had been through this journey. We were quickly connected with another cleft family for mentorship and provided loads of information by the cleft team, so we felt more prepared.
How would you describe your overall experience with Midwest Cleft & Craniofacial Specialists?
Like family. Our family and friends have asked us if we’re nervous for surgeries, and our response has always been no. We genuinely feel like we’re sending our child back to two goofy uncles who just so happen to be highly skilled cleft surgeons.
What aspects of your care with our team stood out most to you?
From the front desk to the surgeons, they’re all incredibly personable. They remember our names and our story. They don’t leave you hanging. They check in regularly even between appointments and surgeries. They don’t just provide care. They actually care.
How did our team support you and your family throughout the process (before, during, and after treatment)?
As I mentioned above, we’ve just felt wraparound support in all domains of Kross’s life. While in the hospital post-op, the front desk staff recognized me in the cafeteria on her lunch break and checked in. The child life specialist was on the unit each day to give cleft-specific advice. The social worker came to visit us just to be kind. Our surgeons stayed connected with us over the phone throughout healing, asking for photos and updates and answering questions as needed.
If you explored or received care elsewhere, what differences did you notice with Midwest Cleft & Craniofacial Specialists?
There was no need to explore other options. We were sold at our prenatal team’s appointment.
In your view, what makes Midwest Cleft & Craniofacial Specialists unique compared to other programs?
The entire team is truly a team. They all work together and work as a family. When you can tell the professionals love and respect one another and their specialties, you feel confident knowing they love and respect you and your child. When it’s time to get down to business, they do so, but their hearts and their humanity is easy to see at the forefront.
Can you share a moment or interaction with our team that felt especially meaningful or reassuring?
Our son had an unusual pain response to lip repair, which resulted in staying in the hospital for a bit longer. Kross really needed his nasal stents removed so he could get comfortable enough to eat. Dr. Weiss came in on his Saturday off in plain clothes and a ball cap to remove the stents. He showed up for our son just how he would’ve shown up for his own sons.
How has treatment with Midwest Cleft & Craniofacial Specialists impacted your child’s (or your) confidence, daily life, or overall well-being?
Cleft life comes with lots of changes and uncertainty around one of the most basic bodily functions: eating! Our kiddos have to eat to thrive, and the team recognizes any challenges with this as an urgent priority. I’m more confident knowing that if we run into an eating challenge, someone will help us troubleshoot quickly.
What would you say to another family just beginning this journey or deciding where to seek care?
Don’t pass go. Just come straight here. We’re all family, and we’ll figure it out together!
Compassionate Care for Complex Needs
Helping patients and families find trusted care with confidence and support.
