Milana's Story

Three-year-old Milana has attended Blythedale's Specialized Feeding outpatient program for more than a year now. As a medically complex child, finding all the therapies Milana required - in one location - was difficult for her mom, Deanna.

Milana was born with Pierre Robin Sequence, a rare congenital condition characterized by an underdeveloped jaw and an atypical displacement of the tongue. For Milana, this resulted in an obstructed airway. Six weeks after she was born, she underwent complicated surgery to lengthen her jaw to assist with her breathing, eating, and ability to sleep. While healing, Milana was diagnosed with an even rarer condition in which her body lacked sufficient bone protein to ossify the calcium in her bones in order to grow new bone. This resulted in a fracture of her jaw. 

Since her birth, Milana has been fed through a gastrostomy tube, providing direct access to her stomach. Once she was discharged from NewYork-Presbyterian Morgan Stanley Children's Hospital, her family sought out outpatient services for her including feeding, speech, occupational and physical therapies. Often those therapies were in separate locations, resulting in at least 10 to 12 appointments per week.

"Basically, I was driving all around Westchester County five days a week and that became really difficult and really taxing," said Deanna.

Blythedale's Robert Stone Day Hospital program overseen by Unit Chief Dr. Divya Lakhaney allows children the ability to receive multiple therapies a day in one location while also being able to live at home. Dr. Lakhaney is also the Medical Director of NewYork-Presbyterian/Columbia University Irving Medical Center's Complex Care Program.  

After a recent procedure at Columbia, Milana was referred to Blythedale's Day Hospital, in the Specialized Feeding program, under Dr. Lakhaney.

"When we came into Blythedale for our initial intake and evaluation, I discovered that Dr. Lakhaney was working here and she was on Milana's care team at Columbia," said Deanna. "It was a testament to Blythedale that the caliber of care carried over from Columbia to Blythedale."

Dr. Lakhaney understands the need for a program that allows those in this age group to be able to receive feeding therapy but also other services at the same time.

"Feeding difficulties, like many diagnoses, don't typically happen in isolation," she said. "Often, like in Milana's case, there are other services needed so what I think is unique about our program is that we're able to provide patients those services all in one day but then they can also live at home."

Deanna was seeking an opportunity to provide Milana socialization with other children her age. In Blythedale's specialized program geared toward preschool-aged children, Milana is joined by other toddlers who also require intensive therapies.

When Deanna picks Milana up from program, Milana happily answers the question, "How was school today?"

"She can't wait to tell me about her day, which is such a change for her to be able to verbalize but to also tell me about the foods that she tried and the different tastes." 

Each morning at drop-off, Milana is picked up in Blythedale's lobby with other children in the program and they are brought up to one of Blythedale's early childhood classrooms. Each classroom has half-moon shaped tables that seat two to three toddlers at a time with room for their individual feeding therapists. Milana's feeding therapist, Rachel Ferrara, SLP-CCC, works with Milana to try new foods as well as coach her to take "big girl bites" using the back of her mouth with her teeth. Once everyone finishes eating, the children play with a kitchen playset, a sand table, or read books while they wait for their therapy appointments. Samantha Ballengee, ​OTR/L ,Milana's occupational therapist, takes Milana's hand and walks with her to Blythedale's Therapy Village where they work on different age-appropriate skills, as well as learn how to brush her teeth. Initially, Milana also needed assistance with walking and climbing stairs through physical therapy but has since made significant progress and no longer needs that therapy.

"Our program assesses our children to recommend what services they need and the frequency," said Dr. Lakhaney. "We are then always collaborating with our doctors, nurse practitioners, therapists and school classroom providers to re-evaluate and change recommendations as the children progress."

After Milana's therapy appointments, she's brought back to the classroom where the children sit in a half circle for Circle Time and learn their numbers, ABCs, and other age-appropriate activities led by their classroom teachers. Milana is an active participant, often dancing and singing along to songs. Liana Kurkjian, SLP-CCC, Milana's speech therapist then comes to the classroom to bring Milana to the Stavros Niarchos Center for Speech Pathology and Audiology where Milana works either in a solo session or a group setting with another toddler. Afterwards, she returns to the classroom for lunch before the school day ends.

Being able to see Milana progress has given Deanna hope for her daughter's future.

"As a family, we are so hopeful for Milana's future. We see what she's capable of, what her classmates are capable of, and know that she's going to reach her full potential because Blythedale's going to get her there."