Every step for Tyler: Run/walk to benefit CHARGE syndrome research

August 01, 2011|By MARIE GILBERT |
  • Bryan Glines' nephew, Tyler Matthew, died from complications related to CHARGE syndrome. Glines, along with his sister and Tyler's mom, Kristen, and their families are hosting the Tyler Trot to raise money for CHARGE research.
By Kevin G. Gilbert/Staff Photographer

Typical excitement surrounded the birth of Kristen and Jason Matthew's first child.

There was a nursery to decorate, a name to select and last-minute preparations as they awaited one of the biggest moments in their lives.

The moment would be bigger than they ever imagined.

Tyler James Matthew was born in the Baltimore area on Aug. 2, 2004 — a week past the due date, resulting in an induced delivery that ended in an emergency Cesarean section.

But as Tyler was placed on his mother's chest, she sensed something was wrong, she said.

His breathing wasn't normal.

"He seemed to be struggling as though he were drowning," Kristen Matthew said.

The medical staff immediately began working on the infant, including suctioning. But there was no relief.

The diagnosis

For 17 days, Tyler underwent tests, all the while still struggling to take a breath.

After being transferred to Johns Hopkins Medical Hospital, a bronchoscope discovered the infant had a floppy airway. He ended up having a tracheostomy on his 3-week birthday.

But Tyler had other problems, besides his airway, his mother said. He was born without functioning T-cells and underwent a T-cell infusion from a matched donor.

He was eventually diagnosed with CHARGE syndrome — a genetic pattern of defects involving extensive medical and physical difficulties that differ from child to child.

The letters in CHARGE stand for Colomba of the eye; Heart defects; Atresia of the choanae; Retardation of growth and/or development; Genital and/or urinary abnormalities; and Ear abnormalities and deafness.

In addition to breathing problems, Tyler also was diagnosed with profound hearing loss in both ears and was treated for bouts of dehydration, various bouts of graft versus host disease, swollen lymph nodes and urinary tract infections.

After fighting a brave battle, Tyler died on Jan. 24, 2006, due to complications from a progressive and untreatable lung disease.

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