Benny’s smiles light up the room

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Over the past several months, Benny Miller wiggled his way into the hearts of nurses and other caregivers in multiple units at Riley Hospital for Children.

First, in the Simon Family Tower NICU, then the Maternity Tower NICU and finally in the Progressive NICU – a new unit on the eighth floor supporting babies who are closer to discharge.

And now, little Benny is home for the first time since his premature birth Dec. 1.

From the nurses who riffed on Elton John’s song “Bennie and the Jets” with their own version of “Benny on the Jet” when he was on high-frequency jet ventilation in the NICU, to the cuddlers who came in to rock him when his parents couldn’t be there, Benny is one popular guy.

But no one loves him more than his parents, Joey and Madison Miller of Indianapolis, who have had a rocky start to parenthood with their first child.

Benny was measuring small in the womb, so Madison, a NICU nurse herself at an Eastside hospital, underwent genetic testing before he was born. The tests revealed nothing unusual, but the Millers were still uneasy and planned to deliver at Riley’s Maternity Tower so the team there could be ready for any complications.

But Benny had other plans and was delivered via C-section at 30 weeks and 4 days gestation (weighing 1 pound 14 ounces) at the hospital where Madison works, then transferred to Riley three days later.

The couple agreed to genome sequencing testing, which is much more extensive, and learned the results a few weeks after Benny arrived at Riley.

“Four doctors came in telling us that it’s this rare syndrome that they don’t know much about,” Madison recalled.

MIRAGE syndrome is an ultra-rare (1 in 1 million babies), severe genetic disorder caused by mutations in the SAMD9 gene. It is characterized by myelodysplasia, infections, restriction of growth, adrenal hypoplasia, genital abnormalities, and enteropathy (affecting the small intestine).

Neither parent is a carrier for the disease, so future pregnancies should be low-risk, but taking the best care of Benny is the only thing on the Millers’ minds right now.

Lucky for them, Benny has a dream team of specialists on hand at Riley, including Dr. Rosalia Misseri (urology), Dr. Nurcicek Padem (immunology) and many more, who will see him regularly in the months and years to come.

The Millers have found support in a Facebook group for parents of children diagnosed with MIRAGE syndrome, so that’s been a help to them, and they are hoping since Benny was diagnosed so young that he will benefit from early intervention.

“In the beginning, it was terrible,” Madison acknowledged, “but since we got the diagnosis and specialists on board right away, that helped a lot.”

Benny has already received one IVIG (intravenous immunoglobulin) infusion, a therapy using antibody mixtures from healthy donors to treat immune deficiencies, autoimmune diseases and infections, and hasn’t needed anymore, his mom said. And other than a bout with pneumonia in January, he has not been sick.

As a NICU nurse herself, Madison said having her own baby in intensive care affected her in different ways.

“I kind of anticipated everything that they’ve needed to do, so that’s been nice to prepare myself, but then also you know too much so you can think the worst,” she said.

She and her husband, an IFD firefighter, found comfort in the nursing team that cared for Benny, including Vincenza Cascella in progressive care, who said Benny had the nurses wrapped around his little finger from the beginning.

“He’s so sweet, and his parents are awesome,” she said.

Madison gives the compliment right back.

“It’s amazing just how much nurses can change your whole day.”

Joey Miller said their goal in sharing Benny’s story is to encourage other parents.

“When we got the diagnosis, there was very limited information online and a lot of doom and gloom. Maybe as more is learned about MIRAGE syndrome, other parents going through what we went through can see something positive and not automatically presume the worst,” he said.

The couple say they feel good putting their trust in the Riley team, even with such a rare diagnosis.

“Having all the specialists in one place is huge, and they’ve been really good at listening,” Madison said. “I think that’s been the best part – being listened to.”

When Benny and his parents got home last week, they were greeted by a giant yard sign welcoming their baby to the neighborhood, and Benny got to meet his new bestie, Hank the dog.

Life at home will be busy, with plenty of medical appointments on the calendar, but Benny, who went home with just a feeding tube and a little supplemental oxygen, is adjusting well, his mom said.

“It’s so much better being home.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org