Mary Alice: October 2007 Archives
“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
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
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.
The quote rang particularly true for us yesterday, when our unborn baby was diagnosed with hydrocephalus. For those as unfamiliar with the condition as we were, it refers to a build up of fluid in the brain. Normally, the fluid drains into the spinal cord, but in our baby's case, remains trapped in the lateral ventricles. That, in turn, causes pressure on the brain and an enlarged head, symptoms our baby shows.
What does it mean?
It means many things as we face an uncertain and frightening future. Most importantly, it means all three of us would very much appreciate being kept in your thoughts and prayers at this time. Initially, Travis and I wanted to wait to find out the gender of our child until birth. It was such a struggle for us to conceive, we weren't concerned with "girl" or "boy" or "pink" or "blue" - just a healthy child. Since the diagnosis, we decided we wanted people to be able to pray for our baby by name. We are having a girl, her name is Arielle, and her sonogram photo is attached. We have found two meanings for the name: Lion of God and ethereal. The combination sums up well the balance of strength, determination, and grace our entire family will need as we cope with the situation at hand.
Medically, what's in store?
The doctor told us to prepare for a long roller coaster ride with a completely unpredictable ending. Worst case: the pressure builds, and Arielle dies before or shortly after she is born. Best case: the potential for a normal life. Everything in between is also on the table: surgeries, vision problems, learning disabilities, physical handicaps, etc. The outcome will depend on how the fluid behaves, on its own or through medical intervention. Naturally our prayer is for whatever is causing the build up to miraculously relieve itself, or for medical procedures to achieve the same result.
Mary Alice was immediately put through a series of tests yesterday that will hopefully help the doctors gain a clearer picture of the situation. To us laymen, the diagnosis and prognosis seems like a giant puzzle shattered into millions of tiny pieces. Every piece helps rule something in or out. Once the test results arrive, we will go to a specialized center in Houston, where they will perform an MRI, and hopefully be able to link more puzzle pieces together for us. That will be in about three to four weeks.
On a different front, Mary Alice's blood condition that prevents her from properly absorbing iron has been causing minor challenges from the beginning - primarily weakness and fatigue. Yesterday, her hematologist made adjustments to her treatment that we hope make more of a difference. We also ask for prayers on that front to help her body become as strong as possible to best support, carry and care for Arielle.
Future communication
It is with heaviest and humblest hearts we share this information with you. For those of you interesting in following our journey, Travis will be setting up a special blog page here on our family website where we will post information as it becomes available. We hope to have something up in the next few days.
We have already found comfort in our immediate family members, which are encircling us with their greatest love and support. We thank all of you for your friendship, and keeping us in your thoughts and prayers at this time.
- Travis, Mary Alice and Baby Arielle
