TrachKids.org

TrachKid Profile

Gilly (Pronounced "Jilly") was born on June 2, 1996. She had her trach installed less than 24 hours after she was born. Her condition is defined as suglottic stenosis and webbing of the vocal cords. Her trachea has a narrowing, like an hourglass, creating an inadequate airway. Additionally, her vocal cords were fused with tissue, leaving her an opening approximately 2 mm to breathe through.This was first evidenced in aphonia, or the inability to speak/cry, at birth. Her vocal cords had not separated in utero as should have happened. The tissue that enveloped them was thick enough that the vocal folds couldn't be separated with CO2 laser surgery.Gillian had her first LTP (Laryngotracheoplasty) on December 3rd, 1997. Cartilage from a rib graft was used to widen her trachea so she had an adequate airway to breathe through. She also had the webbing removed from her vocal cords at the same time, and a plastic T-shaped device called a Keel was installed to prevent the raw edges of her vocal cords from growing back together. The Keel was removed surgically on December 24th, 1997.Her first follow-up bronchoscopy on January 15th, 1998 revealed the graft healing nicely, and the only granulation (unwanted tissue growth) was one area where the vocal cords meet in a "V." This granuloma was removed endoscopically, and a laser was not needed to zap it. She has been approved for training with a speaking valve( Passy-Muir), which allows her to inhale through the trach tube, and forces her to exhale through her mouth and nose.Mechanical dilation of the vocal cords was not successful in establishing the rest of the necessary airway. Bronchoscopies, done on a monthly basis, revealed that additional surgery would be required to finish providing her with an adequate airway.Gilly had her most recent LTP on August 26th,1998. The vocal cords were opened up, and more cartilage was grafted to her trachea to increase the diameter of the airway just below the vocal cords. A stent (plastic tube) was installed to keep the cords apart while they healed. She came home from the hospital on August 29th, and the stent was removed endoscopically on September 18th.Her bronchoscopy on November 2nd,1998, revealed only a small amount of granuloma tissue, which was removed with a CO2 laser.On November 23rd there was another bronchoscopy. The granuloma showed no signs of returning, so the surgeon lasered off the granuloma around the tracheostomy tube. Two days later we tried decannulating her, but she struggled to breathe due to a cold she had just picked up.  She also sounded like her airway was still swollen from the recent laser work, and so was re-cannulated for a few more weeks of healing and recovery from her cold.On December 11th, 1998, she was successfully decannulated!!!  She was sent home after 24 hours of observation with just a band-aid to cover the stoma.After a few weeks to allow the stoma to shrink, a scar revision procedure was done to close the stoma and remove excessive scar tissue from the site of the trach on February 24th, 1999.Gilly has attended speech therapy, and will continue to do so for the next few years until her spoken language skills have caught up.We still resort to sign language occassionally, because her enunciation makes it difficult to understand her at times.So now, other than a few faint scars on her neck, she is a beautiful red-haired, blue-eyed angel with incredible locks of long hair!Gilly is our first child, and we live in Minneapolis, MN.

• Gender: Female
• Demographic Region: North America
• Siblings: One
• Medical Conditions: webbed vocal cords, Subglottic Stenosis
• Ethnicity: white

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3 years 45 weeks

Location

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United States

State/Province

Minnesota