Iowa mom, doctors fight for ‘life-saving’ brain procedure for newborn, after insurance denies coverage

By Sean MacKinnon

Click here for updates on this story

    OMAHA, Nebraska (KETV) — Molina Insurance through Iowa Medicaid repeatedly denies covering what doctors call a “life-saving” brain procedure for a 6-week-old baby boy.

KETV investigates his mother’s weekslong fight to get him a million-dollar treatment covered before it’s too late.

Iowa mother and Air Force veteran Nicole Dawson and her baby boy, 6-week-old Lincoln, have been stuck in the hospital in Omaha.

She’s not there for his newborn checkups.

Instead, Lincoln is being monitored and medicated. He’s having up to 40 seizures every hour.

“They’re just back to back. He’ll have five seizures within seconds,” Dawson said. “I’m constantly wondering if he’s breathing. When’s the next seizure going to happen.”

During pregnancy, Lincoln was diagnosed with a rare brain condition called hemimegalencephaly.

Dawson wasted no time — even tracking down the nation’s leading experts at Children’s National Hospital in Washington, D.C.

Shortly after birth, Lincoln started having seizures.

Doctors Tayyba Anwar and Monica Pearl say the clock was already ticking.

“He needs to come, like, today — yesterday even,” Anwar said.

Dr. Anwar says without help, Lincoln will become severely developmentally disabled, or worse, his seizures could kill him.

Children’s National says they have a solution, a procedure they’ve performed on nine babies over the last decade with successful results.

“So, is this a life-saving procedure?” KETV NewsWatch 7’s Sean MacKinnon asked.

“Yeah, I would say so. Life-saving, life-altering, life-changing procedure. For sure,” Dr. Anwar said.

They’re ready to operate, but Lincoln still has not received treatment.

The holdup?

Dawson’s provider, Molina Insurance through Iowa Medicaid, denied to cover the procedure on Aug. 7.

“They’re basically telling me he has to be on the verge of death before they’ll even give him the help that he needs,” Dawson said.

After an appeal, two days later, Molina Healthcare denied coverage again.

“It’s just hard to, you know, look at them and then just know that he’s looking at me for comfort. And I can’t do anything. My hands are tied. I don’t know what to do,” Dawson said.

That’s when Dawson reached out to us for help. KETV Investigates contacted Molina Insurance and Iowa Medicaid.

After several attempts, Molina Insurance refused to answer our questions, saying they “respect patient privacy and deal directly with members to address concerns.”

Iowa Medicaid said it could not give specifics on the case, but in a statement on Aug. 15, told us:

“There are scenarios that require additional steps for consideration … For example, experimental or exploratory care is not covered by Medicaid unless all other clinical standards have been exhausted.”

That consideration came Tuesday — the same day KETV got that statement — at an emergency hearing as both the insurance company and D.C. doctors got to present their case to a judge.

“I don’t see other centers being prepared to do this on any level, just not even the procedure, but just the pre- and post-procedure care,” Dr. Anwar said.

Legal documents show a doctor testifying on behalf of Molina said the standard course of treatment was a hemispherectomy, an invasive surgery where the affected portion of the brain is removed or a hemispherotomy, where it’s disconnected.

But Dr. Pearl argues it’s dangerous for babies as young as Lincoln.

Their option provides a safe and proven alternative.

“A revolutionary treatment because these babies had no options before,” Dr. Pearl said.

The judge agreed, reversing Molina’s decision to deny coverage, and recommending Lincoln get care in Washington.

“There is no alternative here,” MacKinnon said. “It needs to be done at Children’s National.”

“Yeah, exactly right,” Dr. Anwar said.

Thursday, just two days after that hearing — the moment Nicole fought so hard for, she and baby Lincoln boarded a medical flight from Omaha’s Eppley Airfield to our nation’s capital.

Nicole says she’s nervous about the procedure, as any mother would be. But as Lincoln arrives at Children’s National Hospital, she’s grateful he’s getting the highest level of care.

Nicole says her baby’s health was turned into a legal battle, one entrusted to the scales of justice that weighed just heavy enough to save her baby boy.

Lincoln’s first procedure, of many, is set for next Wednesday. Nicole says Lincoln’s primary and secondary insurance are supposed to be dividing the cost of the medical flight and procedure.

The Ronald McDonald House will be covering her stay in D.C. But she’s still anticipating a $7,000 deductible, plus thousands more from Lincoln’s seizure care after he was born.

If you’d like to donate to Lincoln’s medical bills, click the link below:

gofundme.com/f/help-lincoln-get-the-brain-surgery-he-needs

Please note: This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.