Azayah's Health Journey: Show love to the Harts

As some may or may not know, my sister Toniann and niece Azayah have been in and out of Boston Children’s Hospital multiple times since August due to Azayah needing various surgeries and procedures. The family has struggled significantly with unexpected expenses throughout this time, including airfare to and from Boston, hotel costs, specialized food costs and supplies, medications, medical bills, daycare, etc. Not only has finances taken a toll, but Zuri (big sister) has been cared for by various family members while away from sister and mommy.

Here’s more about Azayah’s journey…..

Throughout Azayah’s first year, she constantly choked on thin liquids, and my sister kept pressing the doctor for answers. During a swallow test back in February, the doctors discovered that Azayah had an abnormality, and in April, Vanderbilt performed multiple tests detecting that she had a rare heart defect. In June, a CT scan confirmed that Azayah had a vascular ring and would require surgery. After extensive research, the family found Boston Children’s Hospital has a vascular ring program.

On August 5th Azayah went in for her vascular ring surgery. The doctors relocated her right aberrant subclavian artery to her carotid artery and moved her esophagus to release the compression on her trachea. After surgery, Azayah’s body rejected the relocation of the esophagus, causing her esophagus to create an S shape. Immediately after surgery, Azayah developed Horner’s Syndrome. Azayah remained in the hospital for nine days.

On August 19th Azayah and Toniann returned to Boston for a four-day admission, where Azayah underwent her first EGD with dilation.

On September 16th Azayah and Toniann returned to Boston for a 4-day admission, where Azayah underwent her second EGD with dilation.

On October 5th, they returned to Boston, where Azayah underwent her third EGD with dilation, and an esophageal stent and NG (feeding tube) were placed. During the same stay on October 14th, she experienced another EGD with dilation, and the doctors discovered she

had developed an esophageal perforation. Three metal clips were inserted for the repair during this time. October 26th, during the same stay, a fifth EGD with dilation was performed, and doctors discussed discharge on October 28th with a 4-week return date for another surgery.

During the initial four-week period between surgeries, Azayah was sick with multiple viruses and required numerous antibiotics. Due to her illnesses, surgery dates kept being moved back.

On December 28th, Azayah and Toniann returned to Boston in preparation for what we hoped to be the final major surgery! On December 30th, the doctors’ performed a right thoracotomy and manually straightened Azayah’s esophagus. They found that her azygos vein was wrapped around her esophagus during the surgery, likely causing all the previous dilations not to work! During surgery, they clipped the vein and removed part of her damaged esophagus. This has been one of Azayah’s most challenging surgeries to date. She had a 2nd chest tube placed during surgery, went to ICU, and struggled significantly with pain management. Once her pain was under control after a few days, she was then moved out of ICU but remained NPO for six days. Due to Azayah’s choking episodes returning with a vengeance, the doctors performed numerous tests. They found the top portion of her esophagus had remained angulated to the right and had a narrowing section right above where they cut out 75% of an area of her esophagus. During this same hospital admission on January 21st, Azayah had a sixth EGD with dilation that additionally has failed to provide improvements.

At this time, Azayah and Toniann remain in the hospital as the team works to create a new plan of action to correct the angulation in the esophagus causing constant choking when Azayah eats or drinks. Due to eating issues, Azayah has not met her dietary goals.

At this time, I am asking for friends and family to rally around the Hart Family (Toniann, Josh, Zuri, and Azayah)! Please be generous in providing donations, prayers, and positive thoughts to help alleviate financial stress, bring forth continued hope for a full recovery for Azayah and the family to be reunited back together.