Case managers facilitate care for special-needs child

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  • By Staff Sgt. Mareshah Haynes
  • Defense Media Activity
SPOKANE, Wash. (AFNS) --  Braelyn Whitford, who is 3 years old, was born with Kabuki syndrome, a condition that affects about 1 out of 32,000 children. Thanks to Air Force medical case managers, Braelyn and other children can get the medical care they need when military treatment facilities don't have the resources to provide specialized care.

She was diagnosed with Kabuki syndrome when she was almost 2 years old. The condition comes from a missing genome off of a chromosome somewhere down the line, said Matt Whitford, Braelyn's father. It causes a cleft palate, delayed development, short stature, kidney problems, digestive problems, low muscle tone and elastic joints and fluctuating hearing loss.

"Every day is different as to where (Braelyn's) hearing level is," Mr. Whitford said. "Fortunately ... (her medical issues) are not as severe as some other kids. Some kids can't walk, some kids can't see, they can't hear period, and she can."

Mr. Whitford said he and his wife, Staff Sgt. Jenna Whitford, who is currently deployed to Afghanistan, knew Braelyn would be born with a cleft palate, blocked kidney and a cyst in her abdomen, but they weren't nearly as prepared for the medical challenges their family would face.

"Basically since she was born, we've had a case manager because everything kind of just went to hell in a hand basket," Mr. Whitford said.

Her most recent case manager is Marcia Bonilla at the 92nd Medical Group at Fairchild Air Force Base here.

"In general, (a case manager's job is) guiding and mentoring specific groups of people through the military medical system, which sometimes involves the civilian medical system, too," Ms. Bonilla said. "Parents of special needs children need help in directing them to the appropriate care in a timely fashion. For children and adults with special needs this starts, hopefully, before they arrive (at their base). (We help with) directing and obtaining referrals to the right provider and making sure they go through; anticipating needs before they arise; counseling and looking at different ways to reach a goal."

Braelyn spent months in the hospital after being born, and, just two months after her family moved to Fairchild AFB, her health took a turn for the worst. She was admitted to the hospital with yet another case of pneumonia, when doctors discovered she had a blood sugar count of 17.

"She should have been in a coma," her father said.

When the specialists Braelyn needed couldn't be found in Washington, Ms. Bonilla had to look elsewhere for the family to seek treatment.

"Across the nation, case managers are connected through the internet," Ms. Bonilla said. "We have a monthly meeting where sometimes questions come up and we banter them back and forth through email. So we do have some congruities from base to base. Every single base is absolutely different and every case manager's load is absolutely different due to the complexion of their base and their community. We are trying to establish more continuity as far as the transfers are concerned."

Braelyn was transferred to Sacred Heart Hospital in Philadelphia to receive specialized treatment from one of the nation's top endocrinology specialists. Ms. Bonilla even arranged for transportation for the family from their home here to the hospital, Mr. Whitford said.

TRICARE only allowed for one family member to travel, but due to the fact that it was such a massive medical complication, Ms. Bonilla worked with both the medical staff in Philadelphia and the 92nd MDG commander and convinced them to cover Mr. Whitford's flight too, so he could be there with his daughter and wife.

"Without TRICARE and Marcia over at the hospital, the plane trip would have never happened," he said.

Once Braelyn was admitted to the hospital, she was diagnosed and a group of more than 30 doctors and medical professionals began planning a course of action for her treatment. Among those was Ms. Bonilla, Braelyn's case manager.

"Even Marcia came down for the care conference, so she knew exactly what was going on and they could ask referral questions and she could quickly answer them," Mr. Whitford said. "A very vital part to everything that was going on was case managers."

"The hardest part was staying positive when I knew there was more going on than the parents thought," Ms. Bonilla said. "It was a relief to see them hooked up with Sacred Heart, (which) I knew would get to the bottom of things. It was a challenge getting them out to Philly, but we have a very understanding (surgeon general) who was onboard with the whole thing and very supportive."

Braelyn's health has improved dramatically and she is preparing to enter the public school system in the fall. She even began walking recently, something doctors said she may never do.

The most satisfying feeling is when you see happy endings like with the Whitford family," Ms. Bonilla said. "When you get some problem solved and you look back and go, 'My goodness, I guess I did accomplish something.'"

"When we were told she had (Kabuki syndrome), we were told not to expect her to go anywhere," Mr. Whitford said. "Not to expect her to walk, to be able to function at a normal level at anything. With the help of Marcia and our TRICARE case manager, they got her (a) walker, they got us to Philadelphia so that we could get help for her that we needed. They're the blessing in disguise.

"Without TRICARE and without Marcia," he said, "we wouldn't be where we are now."