On the Web

Boston Children's Hospital gave us the honor of asking if we would be willing to feature Sloane on their Thriving Blog for the hospital. I was teary-eyed at the idea and welcomed it whole heartedly. It was not easy emotionally to go back and reminisce our journey to the incredible place we are today. When I re-read my blog entries, I was brought back to how challenging many days were to have a child with a birth defect.

Sloane is one month away from 7 tomorrow and the thought makes me tear up each time. Where has the time go? Why can't I just bottle her up and keep her this age? I want more and more of watching her twirl around every day.......

Life is incredibly sweet right now, but we have not forgotten how far we have come......


Here is the link to Sloane's story........

https://thriving.childrenshospital.org/step-step-sloanes-journey-laryngeal-cleft/


Step by step: 

Sloane’s incredible journey with laryngeal cleft

Posted on 04 May 2017 by Jessica Cerretani

 

Posted in Diseases & Conditions, Our Patients’ Stories

 

More On: Center for Airway Disorders, Dr. Reza Rahbar, laryngeal cleft

Like most first graders, Sloane has a jam-packed schedule, filled with fun activities such as dancing, ice skating and playing tennis. But every now and then, this busy girl needs to take a break, even if that simply means taking her time to sip a glass of water. “I remind her that, sometimes, she needs to slow down,” says her mom, Tarra.

Resisting the urge to rush has been a familiar theme for Sloane and her parents ever since she was born — although, ironically, she arrived in a hurry. Tarra had experienced a placental abruption, requiring an emergency C-section. Things only got more complicated. After Tarra had struggled to breastfeed her for days, their Rhode Island hospital finally moved Sloane to the neonatal intensive care unit (NICU) to try to determine why she screamed and started turning blue whenever she tried to nurse.

All told, Sloane spent eight weeks in the NICU, where she was diagnosed with pneumonia and, eventually, a laryngeal cleft. In this birth defect, an abnormal opening develops between the larynx and esophagus. This can cause food and liquid to pass into the lungs, resulting in a number of eating and breathing problems. Sloane’s cleft was almost a Type III — one of the more severe forms of laryngeal cleft.

Finding help

“We had never heard of a laryngeal cleft,” says Tarra. “We were totally green when it came to this, and had trouble finding much positive information about it online.” She and her husband, Alan, knew that their local hospital wasn’t well equipped to care for kids with this rare condition. “We wanted to go where the experts are,” explains Alan. Their search for clinicians skilled in treating laryngeal clefts led them to Boston Children’s Hospital, where they made an appointment with Dr. Reza Rahbar, co-director of the Center for Airway Disorders.

“From the moment we met Dr. Rahbar and his colleagues, I was overcome with a sense of peace, like it would all eventually be okay,” she remembers. “He has a gentle, reassuring manner that helped to calm Sloane — and us as well.”

In March 2011, Sloane underwent surgery to repair her laryngeal cleft. Although the procedure was a success, Dr. Rahbar warned the Ferraras that their daughter might require a follow-up surgery later on. Indeed, Sloane continued to require the feeding tube that had been surgically implanted in her body when she was just six weeks old (it was removed when she was about two.)

A challenging time

But when Sloane failed a swallowing study to assess her health in August 2012, Tarra was devastated. “She had been receiving nutritional and swallowing therapy at the Center, and we had been feeding her with the recommended thickened liquids since she was one year old,” explains Tarra. “Now, I realized that she had been silently aspirating for nearly a year and a half.”

The next two stressful years brought a bout of pneumonia and other challenges that only parents of a chronically ill child can truly understand. At times, it seemed like there was no end in sight as the family traveled back and forth to the hospital, hoping Sloane would improve. After an exploration of Sloane’s airway, Dr. Rahbar recommended the follow-up surgery. That took place in May 2014, making Sloane one of just a handful of children to undergo a second surgical repair. “Whenever I worried that things weren’t progressing, Dr. Rahbar would say, ‘slow and steady, slow and steady,’” says Tarra. “He reminded us that even when it didn’t seem like it, we were always still moving forward.”

A bright future

Today, Sloane is an energetic kid with a contagious smile who shows few signs of her early challenges. “She loves to run and play, but she’s girly and dramatic, too,” says Tarra, who blogs about her family’s experiences with laryngeal cleft in hopes of helping other worried parents. “She’s both as sweet and as sassy as the day is long.”

Sloane recently graduated to annual follow-up visits at Boston Children’s, and a challenge that once seemed insurmountable is now a memory. “Even in our darkest moments, Dr. Rahbar was always a bright spot for our family,” says Tarra. “Just by coming to Boston, we knew we were one step closer to where we wanted to be. Back then, five years seemed so long — but it’s really insignificant in the scheme of things.”

To learn more about laryngeal cleft, visit the Center for Airway Disorders.