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‘She’s Stretched Us in Good Ways’

Suzanne Rhodes | 04/29/14

By Suzanne Rhodes

Leslie” width=”300″ height=”225″ />“As soon as she was born we knew immediately that something was just not right.”

The father who spoke these words is Daniel E., from Chesterfield, Virginia. The morning after Rosemary’s birth on September 7, 2009, he and his wife, Leslie, took their infant daughter to the pediatrician’s office. “That’s when we fell through the rabbit hole and our journey to understanding life with craniofacial anomalies began,” Daniel said.

Pfeiffer Syndrome Diagnosed

Rosemary has Pfeiffer syndrome, a rare genetic disorder that affects bone and skull development. Bones in the skull fuse prematurely, preventing normal growth and causing facial abnormalities such as bulging, wide-set eyes, a beaked nose, and an underdeveloped lower jaw. Rosemary has type 3, the most severe form that adds neurodevelopmental problems to the other conditions. One out of 100,000 babies is born with Pfeiffer syndrome.

Doctors at a hospital in Richmond recommended that Rosemary be treated by craniofacial specialists at Medical City Hospital in Dallas, Texas, but before the family could make the trip, the baby had to undergo life-saving brain and skull surgery due to a high level of pressure on her brain.

“At four-and-a-half months old and three additional major surgeries later, we thought Rosemary was stable enough to finally travel to see the team of experts in Dallas,” Daniel said. But with a distance of 1,200 miles and three other children at home, the travel costs were prohibitive. Friends and family raised funds for airline tickets to Dallas, and Rosemary was able to see specialists who expressed “alarm about a large knot that was growing on the side of Rosemary’s head,” her father said.”

More Surgery Needed

The family returned to Richmond and soon learned from physicians that the baby “urgently needed another surgery to repair a growing skull fracture . . . caused by the first surgery that she had.”

Daniel said he knew they had to return to Dallas soon but lacked funds for the trip. Searching online, he found Mercy Medical Angels.  The travel coordinator arranged a charitable flight, and Rosemary was able to get the essential surgery—a craniotomy, cranial vault remodel, and repair of the skull fracture.

MMA Provides Second Flight

In April 2011, tests revealed that she needed further surgery and a tracheostomy to relieve breathing problems, so Daniel again contacted MMA for assistance. A second flight to Dallas was arranged. Rosemary’s surgery was successful, but because she wasn’t stable enough for travel, her hospitalization had to be extended four days. “Originally we thought we would be able to go home on a Monday,” Daniel said. Doctors revised the date to Wednesday. “Wednesday then turned into Friday. Finally, we got the okay to fly home that Saturday. Mercy Medical was incredibly flexible with us, and we were to adjust our flight home based on Rosemary’s extended hospital stay.”

Rosemary Rocks

Rosemary, now four and a half, has a nurse with her at all times. She enjoys riding her tricycle and running around. She is enrolled in a special needs program at Robius elementary school in Chesterfield, where her dad says she’s “a rock star” among the children.  “She’s a really happy kid. She doesn’t talk, but she’s learning to make sounds. She just started picking up a spoon and feeding herself.”

Of her difficult medical journey, Daniel said, “it’s an experience no one should have to go through.” Between ages five and eight, all the bones in Rosemary’s face will be broken. A brace will be inserted with screws in her cheeks and the roof of her mouth. Each day the brace, which she’ll have for six to eight weeks, will be tightened a millimeter. “If it’s successful, we can take the trach out.”

Daniel, Leslie and Rosemary underwent genetic testing in an attempt for doctors to “see if they could ID markers for other kids. If we can help science, maybe other families won’t have to go through this.” With Nathaniel’s birth in 2012, there are now five children. Only Rosemary has Pfeiffer syndrome.

Despite the hardships of caring for a child with such profound disability and despite the uncertainties ahead, Daniel is keenly aware of the positive mark his little daughter is making on his and his family’s lives. “She’s incredibly compassionate. She’s taught us about patience and caring. She’s taught us about ourselves and has stretched us in good ways.”

Suzanne Rhodes is the MMA director of public affairs. She only recently learned that Daniel had used MMA’s services—and Daniel only recently realized his Aunt Suzanne worked for MMA!

 

 

 

 

 

 

 

 

 

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