What's wrong with her?

Come on! You know you want to ask, but it's severely inappropriate so you can't. It's OK, I'll just tell you, but after a quick etiquette lesson.

Obviously we never say something is wrong with a child- especially not my child. Cataleya is every kind of right. Handicapped is also a very outdated and offensive term, so don't say that. The best thing to do is to mind your own business when you see a child who has special needs. If you must ask, "What is her diagnosis?" is the least offensive way to do it.

There is no child who is special needs. All children are just children. No child is autistic, retarded, or deformed. There are children who have autism, mental retardation, or physical deformities, but they are always just children first.

Cataleya was born prematurely at 33 weeks gestation. It was immediately evident she had a congenital heart defect. She was diagnosed with hypoplastic right heart syndrome which is just a fancy way of saying the right side of her heart is smaller than the left. This was causing too much blood to be sent to her lungs, so breathing and bottle feeding were difficult for her. Her latch was fantastic, but she would be exhausted after just a few sucks. She had her first heart surgery- a banding procedure- on January 31st. This surgery attempted to limit blood flow to her lungs so she can breath better, and it appears to have done just that. She's still too small to determine what "fix" they will eventually do on her heart, but we'll know more as we prepare for her next surgery around 6 months. The best outcome would be that she would need a final 3rd surgery when she's 4 or 5 years old and then she'll be done with cardiology.

The heart defect tipped the Dr's off that something else might be going on with Cataleya. Further tests revealed that Cataleya has 22q11 deletion- more commonly known as DiGeorge Syndrome. People with 22q11 are missing the 11th strand in their 22nd chromosome. There are several conditions that can be caused by 22q11- heart conditions, cleft palate, developmental delays, distinct physical features like low placed ears and webbed toes, speech and feeding difficulties, and mental illness. 22q11 deletion is not a death sentence. None of the possible complications are guaranteed to happen, they just place the child at a higher risk for things that could happen to anybody. Some people with DiGeorge don't even know they have it until their child is diagnosed and they get tested. 22q11 is not always genetic, but it can be.

Right now Cataleya is recovering from surgery. She's still breathing on a ventilator and being fed through a tube in her nose. The Dr's are optimistic that she'll be breathing on her own and bottle feeding by next month. Her ears and eyes appear to be set typically. She's focusing on faces and smiling which puts her developmentally on target.

I am hopeful for her future. We are going to work with her in Early Intervention Services and keep an eye out for any early signs of mental instability. Her heart condition is correctable, educational difficulties are workable, and healing is possible.

We don't ever want Cataleya to be judged or limited by her diagnosis, so you probably won't hear me talking a whole lot about it. While there shouldn't be stigma attached to conditions like this, there is, and I don't want to set her up to be treated differently than any other child.