The other side of getting a wish...

[michaeldthomas]

rarelylynne already chronicled the joyful aspects of meeting with the Make-A-Wish Wish Team. Caitlin is still giddy a couple of days later. I’m now going to write about the other side of Caitlin getting a Make-A-Wish wish granted.

Though Lynne and I are excited and happy, we also feel devastated by all of this. Your child only gets a wish granted for one reason: the organization wants to provide the child and family with a happy moment before the inevitable. Caitlin is getting her wish because Aicardi syndrome is life threatening.

From WebMD: “Aicardi syndrome is often complicated by severe mental retardation, intractable epilepsy, and a resultant propensity to pulmonary complications. The condition often leads to death in the first decade. Sudden, unexplained death is common.”

A more “positive” prognosis from the NIH: “The prognosis for girls with Aicardi syndrome varies according to the severity of their symptoms. There is an increased risk for death in childhood and adolescence, but survivors into adulthood have been described.”

From a 2008 RTI International study: “...the risk of death peaked at age 16. The probability of survival at 27 years of age was 0.62 (95% CI, 0.47-0.77).”

Since Aicardi syndrome is so rare, it’s difficult to get a definite prognosis. Even with that uncertainty, though, there aren’t a lot of reasons to believe that Caitlin will make it to 20. One of two things will happen: she will get a series of pneumonias, or she will simply die from unknown causes in her sleep. There isn’t a morning that Lynne and I aren’t terrified to enter Caitlin’s bedroom.

Our baby is going to die. We have a great probability of outliving her. There is nothing we can do to stop this.

This is every parent’s nightmare. I’ve yet to meet a parent who lost a child that wasn’t devastated.

One of the things people often say to us is, “I don’t know how you do it.” It’s simple; we love her and don’t think much beyond the next thing that needs to be done. Make-A-Wish is a glorious thing, but it also made us think about Caitlin’s mortality. It’s been a rough few weeks.

I am now going to give Caitlin some extra hugs and kisses.