Troubleshooter: A little girl fights for heart surgery

Kelly Robinson's 20-month-old daughter Kaia's heart surgery was scheduled to take place on Friday, but instead, she is sitting in a hotel outside the hospital, as her insurance has not approved the surgery.

Kaia has been through so much. In December, she had mitral valve repair via open-heart surgery at UNC. Kelly said they were initially told it was successful, then they got bad news at a follow-up appointment.

"The leak was back to severe, worse than to start with," Kelly said. "Her heart was severely enlarged, still growing bigger and pushing on her liver and covering up parts of her lung."

Kelly said her daughter needs surgery again to try and repair the leaking valve. While she was given options at UNC for the surgery, she said doctors told her if the valve couldn't be repaired, they would place a mechanical valve in Kaia.

Those valves could require replacement surgeries as a child grows, along with other possible complications.

"A mechanical valve required them to be on blood thinners which can cause strokes and clots," Kelly said.

The worried mom kept researching other options for Kaia, and Kelly found a surgeon at Boston Children's Hospital who Kelly said can offer Kaia a better chance at life.

During surgery, if the repair on Kaia's valve fails, surgeons at Boston Children's Hospital have the option of using an expandable prosthetic heart valve. That can be enlarged as the child grows, thus potentially avoiding valve replacement surgeries.

"I will do anything to keep my daughter off blood thinners and a mechanical valve," Kelly explained. "She deserves a normal chance at life."

Kaia is on Medicaid, and working with Kaia's pediatrician's office, Kelly thought she got approval from Medicaid for Kaia to have surgery in Boston. Paperwork from NC Tracks, the state's Medicaid, said the referral was approved.

After learning they were approved, Kelly scheduled surgery in Boston. She also started a GoFundMe page and raised money to get them to Boston. Kaia's surgery was scheduled for Friday.

"Instead we are sitting in a room because it got cancelled because of Medicaid. They are denying coverage right now," Kelly said.

Kelly said the denial is because Kaia's doctors at UNC believe the surgery can happen there.

"They believe she should try for another repair by the same surgeon, the same place, and if it doesn't work put a mechanical valve in."

Kelly doesn't think that option is right for her 20-month-old daughter.

"Horrible that because my daughter is on Medicaid that we can't choose where she goes," Kelly stated. "She is not allowed to go out of state unless approved by a long list of people."

Kelly said without UNC doctors writing a letter of medical necessity, Medicaid will not approve the procedure.

"We don't get to choose what valve goes in her heart because doctors in North Carolina don't offer any other valve other than the mechanical valve."

UNC provided us with this statement:

Kaia Vavia has been under the care of UNC Children's for a congenital heart defect since last fall , when the family transferred care from Duke Medical Center where Kaia received cardiac care for the first 14 months of life.

Kaia had surgery to repair her mitral valve (called a valvuloplasty) at UNC Hospitals in December 2014. Testing at her five-week, post-operative visit revealed continued leakage through the valve, the cause of which is unknown, and ultimately her cardiac care team determined Kaia is in need of another surgical intervention to stabilize her condition.

As it was explained to the family, the ideal and hoped for outcome would be a successful repair by way of conventional surgical methods, another valvuloplasty. In lieu of that procedure resolving the leak, the cardiothoracic surgical team would place a mechanical valve. These recommendations conform to standard of care in North Carolina and across the country, with known long-term outcomes that are excellent.

As is their right, the family has decided they prefer to pursue an experimental treatment at Boston Children's, where in lieu of a mechanical valve, an experimental "Melody valve," made from a cow's jugular vein valve, would be placed. They do not require a specific "release" from UNC, as was suggested in the summary you sent.

The ongoing friction stems from payment for the experimental surgery in Boston. North Carolina Medicaid will only pay for out-of-state surgery if there are no surgical options available within the state of North Carolina, and consideration of such a request requires the physician to submit a letter of medical necessity to Medicaid.

Joint conferences involving all the pediatric cardiologists and cardiac surgeons at UNC concluded experimental treatment was ill advised. The team decided it would be inappropriate to put an experimental valve in so young a patient given the real risks and without any significant experience or evidence the treatment would work long term.

Dr. Sunita Ferns, Kaia's primary cardiologist, asserts that she cannot in good conscience sign a letter of medical necessity for care at Boston Children's given the UNC care team's legitimate concerns about the experimental treatment. She and her colleagues in pediatric cardiology believe it poses unnecessary risks and have concluded that Kaia has a good chance of a successful surgical repair in North Carolina, either at UNC or another comparable pediatric facility within the state.

Although Dr. Ferns feels she cannot ethically attest that the Melody valve procedure is the best or only treatment option for Kaia (that, as I have outlined, is untrue), I understand that our pediatrician-in-chief is submitting a letter to N.C. Medicaid asserting that the Melody valve procedure is not available at UNC or at any other institution within the state of North Carolina. Medicaid will, of course, make the final determination regarding coverage.

Ultimately, Dr. Ferns and her colleagues here at UNC only have Kaia's best interests at heart.

As for Kelly and Kaia, they aren't losing hope.

"It's her life. Why can't she get the best opportunity just because she is on Medicaid?"

A representative with NC Medicaid provided us with this information:

They said they denied the prior authorization for out of state services for a specific heart valve replacement device. They add, the reason for the denial is because the valve device listed by the requesting surgeon is not FDA approved for the purpose listed by the facility in Boston. This means that its use is experimental. Medicaid does not allow the state to cover experimental treatments when there are medically appropriate services available. In addition, the child's condition can be treated at multiple facilities in North Carolina with the appropriate services that are recognized standards of care.

If Medicaid does not approve Kaia's surgery in Boston, Kelly said she will be forced to come back to UNC and have Kaia's surgery there. She said that's the last option.

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