Diagnosis + 3 weeks

“If I had my own way, I’d make health catching instead of disease.” – Robert Green Ingersoll

Today marks three weeks since our unborn daughter Arielle was diagnosed with hydrocephalus, a condition where fluid in the brain doesn’t drain properly. One of the first things the doctor told us was to prepare for a long roller coaster ride. He was right.

The Ups

More than anything else, the outpouring of support we’ve received at this time has been beyond heartwarming. A sincere thank you to every person that has called, emailed, sent cards/flowers/cookies, expressed warm sentiments and/or prayed on our family’s behalf. Each lifts our spirits, which helps Mary Alice in particular remain positive (mostly positive anyway) – and we know that’s good for the baby.

We’re also very happy to report that so far, we don’t appear to be on the worse end of the wide spectrum of possible outcomes. All the various tests were “negative,” so we’re not facing chromosomal defects, spina bifida or combating a virus. Sparing you the medical mumbo jumbo, this basically means they don’t believe Arielle is battling her excess “fluid on the brain” in conjunction with any other abnormalities. In two scenarios that have now been ruled out, such abnormalities are nearly always fatal. There are three specific viruses that can cause hydrocephalus, and both Mary Alice and Arielle tested negative for all three.

Lastly, a follow-up sonogram earlier today revealed that Arielle’s condition has actually improved slightly since the initial diagnosis. Normal lateral ventricles (which store fluid) should measure a maximum of 10 mm. Arielle’s measured 16 mm at her 20-week sonogram. Today, at her 23-week sonogram, they were no bigger than 14 mm. Online, research indicates 12 mm or less is considered a mild form of hydrocephalus and our doctor described today’s findings as: “Cool. Better than cool,” particularly because her condition appears to be stable.

The Downs

While everything has gone as well as we realistically could have hoped for in the past few weeks, there’s the stark reminder of the unknown, and that all outcomes are still possible. Everything depends on how the fluid behaves and how Arielle’s brain responds. Some people’s brain tissue is naturally softer, and therefore rebounds with greater elasticity than others. This condition alone can still “compromise” the fetus, as the doctor put it. It could still be fatal or cause any degree of disabilities: physical, mental, development etc. In all likelihood, if we’re dealing with a mild form, we won’t know the effect for years. More severe forms show impact immediately.

Houston, Here we Come

Our next step is Houston, where they will perform a fetal MRI and we will have our initial consultation with a neurologist. The goal is to better “map” her brain, and chart the best course of monitoring and treatment from here on out. We have been referred to the Texas Children’s Hospital in Houston because the center has specialized medical equipment and experts well-versed with this particular condition.

Please continue to keep us in your thoughts and prayers as we travel and continue to face whatever reports come our way. Initially, our due date was February 22. This condition can necessitate a delivery as early as two months ahead of schedule and immediate brain surgery to drain the fluid. We hope Arielle’s condition will continue to improve, potentially to the point of being able to carry to full term. Thank you all again for your friendship, love and support.