The Diliberto Family

Molly and her husband, Ryan, welcomed their first daughter, Ivory, on 5/13/2022. Ivory was born with Spina Bifida myelomeningocele L5-S1, hydrocephalus, and Chairi malformation. She had closure surgery 3 hours after she was born. She was transferred to Children's four days later for EVT/ CPC (endoscopic third ventricle and choroid plexus cauterization) in her brain. This surgery (EVT/CPC) creates a pathway in the brain, which was preferred by Molly & Ryan originally. The EVT/CPC surgery failed 2 weeks later and she had another surgery for a shunt placement.

Recently, 8-month-old Ivory has been in Children's Pediatric ICU since before Christmas. Teams from Johns Hopkins and other national specialists are consulting with Children's, as all of Ivory's conditions have been one-of-a-kind. Last week Ivory underwent her 7th surgical procedure, a tracheotomy, and, as of Sunday morning, Molly believes that Ivory will be in the hospital for at least another month, with one more surgery to replace a shunt to relieve fluid/pressure in her brain.

Molly and Ryan provided this to share:

On December 14th Ivory had her 5th surgery, decompression surgery. She stayed two nights and came home. Ivory was admitted on December 19th with what they thought was dehydration due to not eating and a UTI. A day later she couldn’t cough or cry. I was holding Ivory on the 3rd day when she went into cardiac arrest. She was then intubated. Almost a month later and 3 failed extubations, they found that Ivory's left vocal cord has paralysis. At this point, doctors think that the fluid in her head is putting pressure on that nerve. They are investigating more. But until she gets feeling back in her vocal cord, she will get a tracheotomy (note this is the most recent surgery that she had). Ivory will be monitored in hopes they found the reasoning for all of this as well as a solution.

This has been (beyond) exhausting, physically and emotionally. Molly and Ryan continue to work each day and then spend their evenings at Children's.

As her friends, we truly want to provide support to them in any way we can. We have created this Go Fundme to support the Diliberto family through this time and show our love and support for them!