Hero is spelled: (Cincinnati CHMC) Center for Infants and Children with Special Needs

Dr. David E. Hall and Ava

They are the smallest clinic at Cincinnati Children's and they care for the sickest children.  They are not your typical medical team.  They call randomly at 9 pm to check on your child just because they were thinking of them.  They are selfless.  Dr Levin, who founded the clinic, was a NICU Dr for years.  He was discharging children with multiple health problems that no "run of the mill" pediatrician could treat.  He started his clinic and has a HUGE hand in why so many medically fragile children are home where they belong.  He advocated for home nursing when it just wasn't heard of. Children home with tracheotomy and vent?! Never!  He is a reason so many children are home on vents running away from their nurses, pulling their vent stand with them!

We met this team while my baby was inpatient.  Her pediatrician had tearfully told us Ava was too involved for her.  "I have residents calling me daily to update me on testing I have never heard of" she said.  This was before Ava had a diagnosis of Mitochondrial disease.  In fact, she was on the fourth floor on TPN (total parenteral nutrition) and terrified of everyone who walked in her room.  I had called this clinic and asked if they were accepting new patients a week prior.  Here walks in 3 physicians, 2 advanced practice nurses, a nutritionist, and social workers.  The team to welcome us.  They sat with us, handed us our first medical binder and listened.  They listened.  Sometimes that's what we need. 

Ava and Wendy Choeteau, RN CNP

Ava is now 4 and she tells Dr Hall she loves him.  When she sees Wendy, who she renamed "Popcorn", she lights up.  She is inpatient so much and we've never had a day where they haven't been in her hospital room.  They not only get to know, but work very well with all her specialists.  If they can't answer a question (which is common with Ava) then they will find an answer or someone who can.  They have went above and beyond the expectations of others to provide a directory for families that need any type of help with their special needs child.   http://www.cincinnatichildrens.org/patients/child/special-needs/directory/default/ 

These people are heroes.  They have made having a child with special needs easier.  I know I have a medical support system whenever I need them, any time of day. They love these special children as much as the families love them.  The entire team, although small, means so very much to so many.  To have an entire team  behind you is like a breathe of fresh air.  Ava has never been textbook and we know she is writing her own book. I know this amazing group of people will do whatever they can to make sure her story has a happy ending.

Hope Lawson Carter is mommy of Ava (and other children).  She is active in the fight against mitochondrial disease and advocates for awareness, research, and a cure.