These days, Mia can usually be found coddling one of her many dolls, participating in the activities of any good mother — feeding, kissing and holding her babies. According to the 18-month-old’s parents, Amy and Ryan Ramkhelawan, it is remarkable to see their little girl do something as simple as carry her doll around their Lilburn, Georgia, home.
The couple knew something was wrong when Mia was born; her right arm hung lifelessly at their new baby’s side following her birth. Amy had a problem-free pregnancy, which made the news of a devastating diagnosis even harder. “Mia had suffered a birth injury called shoulder dystocia in which two nerves in her neck had been severed during delivery,” explains Amy. “We were told most children recover within a few months, however, I felt something more was wrong.”
Sometimes the birth process leads to trauma to the nerves that provide movement to the arm — the brachial plexus. In Mia’s case, the injury affected her shoulder, arm and hand.
Because Mia did not show signs of a spontaneous recovery, the couple discovered through a tremendous research effort that Mia had suffered a brachial plexus injury and time was not on their side. “We had to work quickly for optimal results,” she says. “Thankfully, word of mouth through the medical community put us in contact with St. Louis Children’s Hospital.”
About the Brachial Plexus Clinic
St. Louis Children’s Hospital specializes in treating both infants and older children with brachial plexus injuries. Patients come from all over the country to the Brachial Plexus Palsy Clinic within the Division of Plastic and Reconstructive Surgery, which offers multidisciplinary services including Pediatric Plastic and Reconstructive Surgery, Physical Therapy, Occupational Therapy, Orthopedic surgery, Pediatric Neuroradiology, Pediatric Neurology, Physical Therapy, Social Work, Nursing Specialists and Anesthesiology / Pain Management.
Correct Diagnosis is Critical
The Ramkhelawans first contacted the office of Susan Mackinnon, MD, who has an international reputation in peripheral nerve surgery, plastic and reconstructive surgery and nerve transplantation at nearby Barnes-Jewish Hospital. Dr. Mackinnon refers children to Greg Borschel, MD, at St. Louis Children’s Hospital. Dr. Borschel serves as the director of Pediatric Peripheral Nerve Surgery within the Division of Plastic and Reconstructive Surgery at the hospital and participated in an advanced, one-year fellowship as part of his medical training. According to Dr. Borschel, only a handful of specialists are trained to treat brachial plexus injuries. “Not many surgeons are interested in this type of injury. The anatomy is complex and unfamiliar to most neurosurgeons, plastic surgeons and orthopedic surgeons,” he says. “It’s somewhat of an orphan among these specialties.”
Up until the last decade, many specialists shared the thinking that if a brachial plexus injury did not improve with physical therapy, nothing could be done. “However, 20 to 25 percent of patients born with brachial plexus injuries can benefit from surgery,” he explains. “Most children with these injuries only require physical therapy. Ideally, I prefer to see a baby as early as possible, even within the first week of life to help determine the best course of treatment.”
Innovative Nerve Transfer Technique
The surgery Dr. Borschel and Dr. Mackinnon performed on Mia — nerve transfers — is a very new procedure that only a handful of hospitals offer. “In the 1980s, plastic surgeons took out the brachial plexus completely and replaced it with nerve grafts from the legs,” remarks Dr. Borschel. “In Mia’s case, she had some parts of her hand and shoulder that were working very well and we just needed to fill in some very specific gaps.”
The isolated nerve transfer procedure is similar to a heart bypass surgery. “We used a “spare part” nerve that is still connected on one end and attach that end into the part of the brachial plexus that is not working — leaving the scarring behind and essentially bypassing it,” Dr. Borschel describes. “Although neuroma excision with grafting is a good technique, it may not be for all patients. For some, it may do more harm than good.”
Although the Ramkhelawan’s knew that Drs. Mackinnon and Borschel recommended surgery for Mia, their fear was especially heightened since both Amy and her husband Ryan had worked in the OR at Emory University Hospital: a 12-hour, invasive surgery and 12 hours of anesthetic all on their five-month old, 15 pound baby girl.
“The OR staff at St. Louis Children’s Hospital called out to us every hour. In all my years of work, I never realized how important it is to communicate with families,” Amy admits. “The surgery only took six hours instead of 12 and Drs. Borschel and MacKinnon came out right away and told us that Mia only needed a nerve transfer from her back, not her legs or arms. They sat down with us in the waiting room until all our questions were answered.”
Mia’s case was actually two surgeries in one. The first involved the transfer of one of the nerves in her back that was uninjured to another nerve in the back that controlled her shoulder. The second surgery included the transfer of the nerve that controls the pectoralis muscle, a “spare part” in this condition, to the nerve that controls the biceps.
“Before surgery, she was unable to flex her elbow and had limited motion at the shoulder,” reports Dr. Borschel. “Now, both are quite good. Most kids continue to gain ground for three years after surgery.”
Mia was discharged the next morning following surgery. The family stayed in a nearby hotel so Dr. Borschel could continue to keep an eye on Mia until her return trip home. With the help of a sling, Mia’s arm was immobilized for a month to allow further healing.
“We have been back to St. Louis Children’s Hospital several times and have sent Dr. Borschel videos of Mia’s progress,” says Amy. “Dr. Borschel also coordinates her follow-up through our local hospital.”
A Little Girl’s Progress
It is expected that Mia may have some weakness in her right arm, however, she can move her fingers, bend her elbow and raise her arm. “Mia can suck her thumb and pull her pacifier in and out of her mouth with her right hand, which surpassed what we were told we could expect,” exclaims Amy. “We had a phenomenal hospital experience and Mia’s nurses were fabulous. I don’t think I’ve worked at a hospital where everyone followed through with what they said they would do. Dr. Borschel’s office went out of their way to help us. Her recovery is miraculous; he gave us so much.”