SEIZING THE DAY . . . LIZA'S BRAIN SURGERY BEGINNINGS
February 14, 2021
In the wee hours of the morning Saturday, January 30, 2021, our lives and hearts were turned upside down when my sweet, sweet 7 year old, Liza suffered a Grand Mal seizure. She traveled by ambulance to Children’s of Alabama in Birmingham, and after being evaluated, was released. Later in the day while at home she suffered another intense seizure and yet a second ambulance ride to Children’s.
With what the ER dismissed as a “conversion disorder” causing Liza’s seizures, we have learned so much more that I get angry even thinking that they wanted to send us home without a better work-up. I knew in my gut it wasn’t whatever they seemed to say it was, and thankfully so, demanded they talk to my dad’s first cousin — a Neurologist — on the phone, from 800 miles away no less, who was very cordially and respectfully insistent that something more was at play and she should be admitted. Amazingly it wasn’t 20 minute before the ER team came back to say that Neuro had a change in their plans. And God Bless them, thankfully so.
The first week of February we spent as residents at Children's, undergoing studies, MRI’s and MRA’s, medication trials, and more. It was a long week filled with tears, lack of sleep, back and forth trips to Children’s daily, praying on hands and knees, and just surviving to the day we were able to come home. Several days later we returned to Children's where the Neurovascular surgical team performed a cerebral angiogram.
There really is no easy way — or even comprehensible way - to share what we have learned in the last week and a half since we found ourselves as residents of Children’s here in Birmingham. What we have learned and are coming to terms with is that Liza’s brain is extra special — created by God, made perfect in His image, beautiful in its intricacies — and here is why:
First . . . She has what’s called a Schizencephaly (cleft) in the right frontal lobe (what they believe is causing most of the seizures). It is an extremely rare congenital brain malformation (she was born with it) in which abnormal slits or clefts form in the brain. For today, we are treating with epileptic medications and should it become necessary in the future, a shunt.
Secondly . . . She has what is termed a Right Parietal Arteriovenous Malformation - or AVM. You and I think of it as an aneurysm, though it is actually a bit different and considered a cerebral vascular malformation for its existence as a collection or tangle of blood vessels in the brain that can restrict or alter blood flow. High-risk AVMs can cause bleeding or hemorrhage - - - and Liza’s is high-risk. In the coming weeks / months we will treated with microsurgical resection — in simple terms, brain surgery to remove it.
And Lastly . . . and the most serious of the 3 . . . She has a Dural Arteriovenous Fistula (DAVM). It too is a rare vascular condition where abnormal connections (fistulas) are made between branches of arteries and veins in the brain covering. High-Risk DAVMs pressurize veins of the brain itself (cortical veins) and cause a risk of stroke-like symptoms or hemorrhage. Liza’s is high-risk. She will undergo an several brain surgeries in the coming weeks and months, and then we will go from there as to ongoing treatment if necessary.
Since returning home and adjusting to our new "norm" medication schedules to control seizures, carrying a rescue pack everywhere, waking in the night to check on her, I find myself doing the only thing I know to do throughout the day -- pray and praise God. I thank God for His protection of Liza while we await surgery and I pray for a miracle everyday. I pray for peace and comfort for our family, my parents, and that God eases Liza's worries and fears, and gives her the strength and courage to tackle the journey ahead. I lift up my 3 year old little boy, Finnley, who is too young to know what is happening with Liza’s health, and who’s world has also been upended and thrust into last minute schedule changes and worries he can’t quite understand. And I place my trust in God and His perfect provision, providing the teams of Neurologists and Neurosurgeons with wisdom and guidance to know the right answers, and the best treatments for Liza, as we face at a minimum 2 brain surgeries in the coming weeks and months —- possibly more. Risks are higher than I’d like to think about — cause let’s be honest — it’s BRAIN SURGERY. And not 1 but SOME.
Liza is happy, handling all of this beautifully, slowly returning to her “normal” self — at least for part of the day - and is no different than any other kid who just wants to have fun. She doesn’t feel well a lot of the time, but when she does I’m soaking it up. The journey ahead is not paved with assurances, but it is paved with the promises of God — and in that I find peace, rest, comfort, and the belief that we will get through this wholly and fully.
Not one bit of any mother’s journey with a child facing medical challenges is easy. And this is no exception. It is further compounded by the fact however that each of these diagnosis, individually and separately, is rare. Combined, as in Liza’s case, is even more rare. And so treatment is delicate and we are just so blessed that we caught each one early before she experienced any further adverse effects from any, or all, of them.
Though, through it all, I stand firm in what I know and what I believe -- I believe in the power of prayer. I believe in miracles. I believe that God gives us grace to handle the heart wrenching times in life when we can’t see ahead to even the next morning coffee. I believe God heals. I believe that God allows the hard times in life to help others see His amazing love, protection and faithfulness. I believe God is glorified even in grief, heartache, sickness, and despair. And I believe — and know - that God is moving mountains around us, hears my cries for help, is my source of strength and peace during this season, radiating His goodness and His love by way of a beautiful little girl, made in His image, who doesn’t know a stranger, loves life, dances like a queen, and has defied all odds thus far.
God is good. And He’s with us. These waters may be hard to swim in right now, though we swim with confidence in His never leaving us and keeping us from drowning. And we rest in Isaiah 43:2 — “When you pass through the waters I will be with you.”
