Interested in a shortened, play-by play version of our unfolding story? Then this is the section for you! Skip straight to the bottom if you just need the latest.
June 1, 2007 - The microscopic embryo later named Arielle is implanted through the powers of in-vitro fertilization. Travis and Mary Alice had tried for a number of years to start a family, with no prior success. Doctors ultimately found stage IV endometriosis in Mary Alice to be the culprit of their fertility problems and recommended in-vitro fertilization as the way to go. The cumbersome procedure works the first time, and we're elated.
October 9, 2007: At the 20-week ultra-sound, abnormalities in how the baby's brain is forming are flagged. At the time, the doctor suspected hydrocephalus and scheduled a fetal MRI at Texas Children's Hospital in Houston. We were told our little one may or may not survive, and if she did survive, the condition's impact on "normal" growth and development spans a wide spectrum. Baby may grow to lead a relatively normal life with minor challenges, be severely disabled, or anything in between. We immediately choose to name our baby Arielle, meaning Lion of God, as Mary Alice's motherly intuition indicates the baby has a strong desire to survive and thrive.
November 1, 2007: A fetal MRI is performed and reveals Arielle doesn't have hydrocephalus, but rather complete agenesis of the corpus callosum. In simpler words, the main pathway connecting the left and right hemispheres of the brain failed to form. If it doesn't form in the first trimester, it never will, and there is no operation or cure. Again, doctors say this means an uncertain future for our child's growth and development. Only time will tell. Some lead relatively normal lives, others are more severely impacted. Often there are deficiencies with social skills, challenges associated with reading facial expressions and difficulties with other high-level reasoning functions. Our online research tells us the defect could be isolated or in conjunction with any number of syndromes.
February 15, 2008: Arielle is born via C-section. Welcome our little 6.5-pound angel! In addition to her radiant beauty, we notice a tiny strawberry-tinted patch on the right side of her head, red spot on the tip of her nose, and cloudiness in her right eye.
February 16, 2008: Arielle is diagnosed as blind in her right eye. She has scleralization of the cornea, where the white part of her eye formed over about two-thirds of the colored circle part. The pediatric ophthalmologist says there's no hope for vision in the future because an optic nerve isn't present either. That nerve is key to transmitting information back to the brain. Without it, she isn't a candidate for a cornea transplant. We have a hunch that somehow the eye and brain issues are related, and fear our child has some kind of syndrome as opposed to two random abnormalities.
February 25, 2008: The tiny strawberry patch isn't so tiny anymore, and it's a whole lot brighter. And eroding her right upper lip. We take her to the pediatrician, and it's diagnosed as stork bite, a common birth mark seen in children that usually goes away on its own. Told not to worry. We worry anyway.
March 5, 2008: A neurologist examines Arielle for the first time, and notes nothing abnormal behaviorally, but is concerned her growing red mark may indicate something more.
March 12, 2008: A pediatric dermatologist finally puts all of Arielle's various abnormalities (brain, eye, skin) into one package: PHACE Syndrome. We finally feel like we have an accurate diagnosis. We're told the bright, growing pink marks on her head and face aren't stork bite, but rather a hemangioma, or grouping of uncontrolled blood vessels. It behaves like a wildfire, and destroys anything in its path - such as Arielle's right eye. A quick visit to the PHACE association web site saves us from asking our worst follow-up question, as the "In Memory Of" section pits of the possibility of death deep in our gut. A whole new battery of tests, an echocardiogram of her heart and MRA of her arteries are warranted.
March 13, 2008: An MRI of Arielle's brain reveals new findings: her right cerebellum and right carotid artery failed to form properly, but the bulk of her right optic nerve is there. The right cerebellum controls movement on the same side of the body, so we are told to pay extra attention to the way she moves her right arm, hand, leg, etc. The carotid artery provides essential blood and oxygen to the brain.
March 20, 2008: Echocardiogram shows Arielle's heart is structurally and functionally normal. We do a happy dance.
March 25, 2008: Because the hemangioma continues to grow at a rapid pace, Arielle begins taking a daily dose of steroids, which ideally will stop its growth in 6-8 weeks.
April 26, 2008: Arielle has been smiling for a good week now, and today we finally have a picture to prove it! Ok, ok, this doesn't sound as medically monumental as the other stuff, but it's a great sign of her ability to connect and express happiness, which is significant.
June 2, 2008: A third MRI and the first MRA reveal more details. On the down side, it shows the hemangioma is even larger and in more spots under the surface than above. Arielle's daily steroid dose is doubled, and we're really noticing the side effects now (voracious appetite). On the plus side, her entire optic nerve, though very small, is all there. Best news: there an extra "loop" in Arielle's artery system (can't be explained), and the left side is picking up the slack for the right side - meaning proper blood and oxygen flow throughout her entire brain. This is HUGE!
June 17-18, 2008: Appointments with two different Early Childhood Intervention, or ECI, specialists indicate Arielle is meeting all of her developmental milestones. She's smiling, cooing, grasping, tracking, and rolling over well. And eating like a champ.
July 14, 2008: Arielle starts receiving propranolol, a drug commonly used for people with heart conditions, to treat her hemangioma. We immediately notice much greater results on her hemangioma with this medication, and it has many fewer worrisome side effects. Shortly thereafter, we begin to wean her off steroids.
September 9, 2008: Arielle crawls - for her favorite toy of the moment, a little wooden elephant from Germany. This is more than one month ahead of the "norm."
September 11, 2008: Arielle's neurologist says she's developing "perfectly" to date.
Stay tuned for future updates!