Gavin’s Story

My husband and I welcomed our third son to our family in the summer of 2009. Just as we were getting into our new routine, our world was turned upside down. At just fifteen days old, Gavin was rushed to the hospital because he had difficulty breathing. I’ll never forget waiting for the ambulance to arrive as we watched our 2 week old baby boy turn from bright red to a pale white, then a dusky gray. He was rushed to our local ER and put on cpap. Thank God the Neonatologist was present (truly one of the many tiny miracles we’ve encountered) and able to order labs immediately. Gavin was found to be acidotic (too much acid in his blood). The main question was why?
Truth be told, while our local hospital did a great job of stabilizing Gavin, they had no way of knowing for sure what was wrong. These types of problems aren’t easily or quickly diagnosed.

The Neonatologist who took our case knew that something was terribly wrong. He quickly consulted the experts. He put in a call to the genetics department at Nationwide Children’s who opted to have Gavin transferred down to Columbus where they could do further testing. Our genetics team quickly became our support system and lifeline. Within a couple months, Gavin was diagnosed with a metabolic disorder called Pyruvate Dehydrogenase Complex Deficiency.

PDCD is a disorder which does not allow a person’s body to metabolize carbohydrates to make energy. Because Gavin’s body lacks energy, his systems don’t function well. As a result, he has damage to his brain and has seizures. He also requires a tracheostomy and ventilator to breathe, he uses a feeding tube for nutrition and we use a wheelchair to help him get around. Due to Gavin’s complex medical needs, we now see several specialists at Nationwide Children’s. Each department we’ve dealt with has been incredibly supportive and insightful. Despite Gavin’s disabilities, he enjoys life and is full of smiles. Gavin loves books, cartoons and his family.

While our experiences haven’t been easy, my family and I are grateful for what we’ve learned from each of them. We’ve learned to stop and cherish moments that might have otherwise passed us by. We’ve learned that all the little things, like smiles and healthy days, are worth celebrating (they really are the big things). We’re thankful too for all the people we’ve met through Gavin along the way. We’re not sure where this road will lead us, and we know that there will be more tough times ahead but I’m happy to say that what started out as incredibly scary, sure has been fulfilling.

https://flutter.nationwidechildrens.org/wp-content/uploads/gravity_forms/4-ede9f44fbfc12d4ad796078917b471d6/2017/09/11035464_904923379529825_1920882510333668173_n.jpg

My husband and I welcomed our third son to our family in the summer of 2009. Just as we were getting into our new routine, our world was turned upside down. At just fifteen days old, Gavin was rushed to the hospital because he had difficulty breathing. I’ll never forget waiting for the ambulance to arrive as we watched our 2 week old baby boy turn from bright red to a pale white, then a dusky gray. He was rushed to our local ER and put on cpap. Thank God the Neonatologist was present (truly one of the many tiny miracles we’ve encountered) and able to order labs immediately. Gavin was found to be acidotic (too much acid in his blood). The main question was why?
Truth be told, while our local hospital did a great job of stabilizing Gavin, they had no way of knowing for sure what was wrong. These types of problems aren’t easily or quickly diagnosed.

The Neonatologist who took our case knew that something was terribly wrong. He quickly consulted the experts. He put in a call to the genetics department at Nationwide Children’s who opted to have Gavin transferred down to Columbus where they could do further testing. Our genetics team quickly became our support system and lifeline. Within a couple months, Gavin was diagnosed with a metabolic disorder called Pyruvate Dehydrogenase Complex Deficiency.

PDCD is a disorder which does not allow a person’s body to metabolize carbohydrates to make energy. Because Gavin’s body lacks energy, his systems don’t function well. As a result, he has damage to his brain and has seizures. He also requires a tracheostomy and ventilator to breathe, he uses a feeding tube for nutrition and we use a wheelchair to help him get around. Due to Gavin’s complex medical needs, we now see several specialists at Nationwide Children’s. Each department we’ve dealt with has been incredibly supportive and insightful. Despite Gavin’s disabilities, he enjoys life and is full of smiles. Gavin loves books, cartoons and his family.

While our experiences haven’t been easy, my family and I are grateful for what we’ve learned from each of them. We’ve learned to stop and cherish moments that might have otherwise passed us by. We’ve learned that all the little things, like smiles and healthy days, are worth celebrating (they really are the big things). We’re thankful too for all the people we’ve met through Gavin along the way. We’re not sure where this road will lead us, and we know that there will be more tough times ahead but I’m happy to say that what started out as incredibly scary, sure has been fulfilling.

Share Gavin's Story

Comments

More Stories

  • LeDarius .

    Atrial Septal Defect (ASD)

  • Carter R.

    Age: 7 Years | Anorectal Malformations / Imperforate Anus

  • CJ .

    Dextro-Transposition of the Great Vessels (d-TGA)

  • John E.

    Age: 25 Years | Urinary Tract Disorder

  • Aaron W.

    Age: 13 Years | Cerebral Palsy

  • Kaylor B.

    Age: 10 Years | Nephrotic Syndrome