What does 7-month-old Rayah Lynn Enman, daughter of Dan and Karen Enman, of Gorham, have in common with professional athletes, Mia Hamm (soccer), Kristi Yamaguchi (figure skater), Freddie Sanchez, Larry Sherry, Jim Mecir (baseball), Charles Woodson, Troy Aikman, Pat Summerall and Leroy Butler (football), along with others?
They were all born with a condition called “clubfoot” also known as “talipes equinovarus”, which is a congenital foot deformity affecting bones, tendons and blood vessels. The condition is fairly common, occurring in about one of every 1,000 newborns and affecting boys twice as often as girls. It can be present in one or both feet, with a 50 percent chance of being bilateral (affecting both feet). It is often detected by fetal ultrasound before birth and is definitely visible at birth.
Rayah’s condition was diagnosed via ultrasound at 20 weeks gestation, on her left foot, and her Mother (Karen McCosh Enman) a nurse, began the process of exploring, researching, talking to other families, mostly mothers, who had given birth to children with clubfoot.
So by the time Rayah was born on Aug. 6, 2019, treatment was already planned, scheduled and ready to begin. In some cases joint surgery is required, but little Miss Enman did not need it but instead the Ponseti method of therapy was adopted. The foot is manipulated into correct position by an orthopedic doctor, begins right after birth and involves a strict regimen of stretching, overstretching and repositioning, and then weekly casting.
Ten days later (on Aug 16), Rayah received her first cast at the Children’s’ Hospital in Massachusetts. Her foot was recasted pretty much every week, early Friday morning until Oct. 1.
Because the angle of the foot causes the Achilles tendon to be contracted and much shorter, a procedure called a tenotomy was performed. This procedure is a necessary one in about 95 percent of clubfoot cases. The Achilles tendon is cut, which is a heel-cord release of the tendon, which allows it to lengthen naturally.
Directly after this particular surgery, Rayah received her last cast, which was on for the next 24 days.
Then Rayah, a little less than 3 months old, was fitted with boots connected with a bar (to stabilize both feet) on the day the final cast was removed (Oct 26).
Shortly after the fitting she developed significant blisters on her unaffected foot. Because of that, Karen did some serious troubleshooting for weeks, trying to find a solution to this dilemma. For a significant amount of time Rayah went without a brace to allow the blisters to heal. A new and different ADM brace was used on a trial basis from Dec. 28-Jan 22, but to no avail — it, too, failed.
After much more detailed investigation, and reaching out to other parents with similar issues, Karen and Dan were led to Jerald Cunningham of the Cunningham Prosthetic Care in Saco, Maine, on Jan. 29, 2020. He had invented the DTKAFO (Cunningham Brace) 15 years before, so Rayah was fitted with the new brace and her parents were trained on all the details of this brace.
They brought her home to begin this phase of the treatment for this foot condition. Finally, after five months of problems, the happy parents have found a brace that works effectively, didn’t leave any blisters and allowed Rayah the freedom to grow and develop more naturally, without the restrictions the other braces had.
Rayah has begun working with local Physical Therapist Reggie Coulombe, who has helped not only with the specific therapy he does at his clinic, but also has developed flexibility and strength exercises that the parents can do, (and in many cases already have been doing) at home.
Karen has been very diligent in her research to find what is best for not only their child but also to help other parents in similar situations.
She said that, “Parents advocacy efforts are important not just for braces and other treatments, but also for giving them encouragement, strength, faith and perseverance to keep at it. Alternative bracing is becoming more popular.”
Both Dan and Karen were concerned, worried and anxious when they knew their little girl would have a musculoskeletal deformity.
Dan said, “We knew it could have been worse, but it could be fixed, and I had a peace that had to come from God.”
Karen, being a nurse and a mother, was “devastated at first when I found out the news through the ultrasound, but explored everything I could about the condition, and I connected with other families who had the same issue with their child.”
Rayah's father Dan said, “The trips to Massachusetts for many weeks of treatment, castings, and surgery offered some special bonding time with my wife and new little baby girl. We had trials, tribulations and some complications along the way, but with great care from the doctors, and Karen’s doing excellent research on the condition of club foot, we got exactly what we needed and right now Rayah’s foot looks and functions nearly perfect.”
Through this experience, Karen said she has been, “inspired to continue working with Clubfoot Research Foundation in hopes of helping to find more answers about the condition and advocate for more quality treatment and practicing better bracing methods. I also want to work with the Miracle Feet Organization to help children with the same condition in third-world countries. If interested, one can get more information and/or send donations to miraclefeet.org.”
Both parents agreed: “After all we/she has been through over the first seven months of her life, we wouldn’t change a thing, as Rayah had the absolute best care from our dream team of Dr. Kasser, at Boston Children’s’ Hospital, Jerald Cunningham at Cunningham Prosthetics, Reggie Coulombe at NCH Pt, Dr. Beals at CCFH and all of their staff members.”
Dan and Karen were quick to point out that, “There is no doubt in our minds that Rayah will continue to impress everyone around her and who knows, she may become an excellent athlete in the same category as Hamm, Aikman and the other clubfoot overcomer athletes. She also will grow up with her already determined, kind, patient and loving attitude.”
To add to this story, Rayah has a very active older brother, Liam, and his energy and athletic ability will most likely inspire her to continue the process of healing up and being active.
All of Rayah’s family, including, her great-great-grandmother, Lorna Stiles, great-grandparents, Diane Holt, Georgette McCosh, and Don Enman, and grandparents, Steve and Leslie Morrissette, Steve and Louise McCosh and Steve and Melinda Enman, are all impressed with little Rayah’s will and determination, as well as her pleasant disposition despite all she has been through. She is already looking to walk, with two little feet that function quite well, thank you! Watch out, Mia!