Project Description

Child’s Name: Erin

Child’s Condition: Charge Syndrome

Attended Heel & Toe Since: 2017

Receives: Conductive Education, Physiotherapy

Erin was given the diagnosis of Charge Syndrome at 3 months old, as well as being hearing impaired. Due to her tracheostomy Erin is non-verbal.

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Erin’s Story

Erin was born at 31 weeks gestation. A 12 week scan showed Erin was suffering from Exomphalos. This is where there is a weakness of the baby’s abdominal wall where the umbilical cord joins it and meant that Erin required fetal medication in utero up until her birth, where she was intubated immediately as she did not breathe independently.

Erin only weighted 3lb 11oz. at 10 weeks old she had a tracheostomy and feeding tube fitted, and has also required 2 blood transfusions as well as surgery to close up a PDA (patent ductus arteriosus – heart condition). Erin was given the diagnosis of Charge Syndrome at 3 months old, as well as being hearing impaired. Due to her tracheostomy Erin is non-verbal.

Erin enjoys playing with musical toys and sensory toys that she is able to hold on to. She dislikes being placed on her tummy for any length of time.