The Day That Changed My Life Forever by Angela Wach
Today is not my wedding anniversary, or even a birthday or a deathday. It is not the day we got a new home or the day Tony graduated from dental school or even the day he bought his practice. But it is without a doubt the marker of one of the biggest days of my entire life and the day that has forever changed our family. Today is the three year anniversary of Brian’s hemispherectomy. What is a hemispherectomy you ask? Let me start from the beginning.
Brian was born on November 13, 2004 in Lexington, Kentucky. My pregnancy was uncomplicated (unless you call puking your guts out all day every day for the first 7 months complicated) and labor and delivery went very smooth. I believe I am even smiling in the pictures (that would be the epidural). After delivering an 8 pound baby boy, the nurse handed Brian to me and informed me that he had a bruise and possibly a birthmark on his face. I took one look at my child and was devastated to see that one half of his forehead, one eye, half of his nose and half of his lip was covered in a dark purple port-wine-stain (they call it a “wine stain” for very obvious reasons). I couldn’t believe that my boy was afflicted with such a mark. I was assured that there were no reasons to be concerned about his half purple face and that we could do plastic surgery in his teen years. Of course I had nightmares of taunting and teasing running through my mind and all I could think of was “Why my son?".
Upon returning home from the hospital, I started researching port-wine-stains. I found many sites which said there was no reason to be worried, but that in rare cases if the birthmark covers the forehead, upper eyelid, nose, and upper lip there could be a rare progressive brain disease called “Sturge-Weber Syndrome”. The symptoms of this disease were: seizures, semi-paralysis, mild to severe mental retardation which in many cases is progressive, glaucoma, and cosmetic complications due to the birthmark. Needless to say I FREAKED OUT! I called my husband to come look at what I had discovered and although he tried to put my fears to rest, I had the sickest feeling that my little boy was one of these rare individuals. I no longer cared about the birthmark on my son’s face. I just wanted him to live a healthy life. Our pediatrician recommended we have an MRI done, and the neurologist explained that Brian could or could not have Sturge-Weber Syndrome. He basically said to wait and if seizures developed within the first 2 years of life then we would know that he did indeed have this disease. Tony and I drove home in silence, not daring to ask what the other was thinking until we were nearly home.
In April of 2005 I was feeding my pleasant angel of a boy when I noticed that he wasn’t latched on like he should’ve been and milk was dripping down his face onto the floor. Then I felt the jerking. His arm was jerking and I couldn’t get it to stop. I sat there frozen-knowing that one of my worst nightmares could be coming true. I called my husband to come upstairs and he held Brian while I called the neurologist. We packed up our kids and drove the 1 ½ hours to Cincinnati Children’s Hospital. Little did we know that for the next year, this place would be our “home away from home”. The right half of Brian’s brain showed an incredible amount of deterioration since the MRI he had shortly after birth and they confirmed that he did indeed have Sturge-Weber Syndrome. Tony and I felt the world crash in around us and all of the hopes and dreams we had for Brian were shattered! We wondered how fast Brian’s brain would deteriorate and realized this would change the rest of his life and all of the hopes and dreams we had for him. We felt like we had just lost a child. I cried and cried and once again I found myself asking, “Why my son?”
The next six months would include dozens and dozens of trips to Cincinnati as we struggled to control Brian’s seizures. (I swear the EMS in our town had to be sick of coming to the Wach house to transport Brian to the hospital AGAIN). Dr. Franz (Brian’s neurologist) would prescribe a medication, only to have Brian seizing again within a few days. We traveled to see doctor’s in many states, hoping to find the best treatment for our son. I started to see my little boy deteriorate before my very eyes and I spent countless nights standing over his bed so I could identify and attempt to stop every seizure. I feared that the seizure I missed would be the one that would end his life. My husband lost his wife for that year and my daughter lost her mother. You hear about people that go into “survival mode”? Well, I was in “survival of my child” mode. All that mattered to me was saving my son. I continued to ask myself, “Why my son?". I cried enough tears that year to plant and water an entire garden. A very, very large garden.
I adapted to carrying Valium with me everywhere I went because more often than not I had to pull to the side of the road and administer the medication to stop a seizure. I learned to drive with one eye on the road and one eye looking in the rear view mirror at my son. Brian’s seizure journal became like a Bible to me. I documented each seizure: what time they started, what parts of his body jerked, what time they ended, how he responded afterwards. I studied each seizure to learn how I could be more prepared for the next one.
Makayla spent the first year of Brian’s life in fast food restraunts and hospital waiting rooms. She had to mature so much at the ripe old age of 2. She got used to being separated from us for days and weeks at a time as we sat at our son’s bedside in hospitals. Her third birthday arrived the day that Tony, Brian and I returned from a week long trip of EEG testing John’s Hopkins Medical Center in Baltimore, Maryland. We were so excited to be able to see her on her special day. Within a couple hours of our arrival home, Makayla began opening her gifts and then I noticed the jerking begin. Brian was having a seizure. I began timing the seizure and we sang “Happy Birthday” to our daughter and cut the cake while I was running up and down the stairs, gathering the things we would need for another hospital trip. I can’t even imagine how terrible that birthday was for her. Tony and I were out the door in ten minutes and my sister, Natalie drove the hour and a half to Louisville to drop Makayla off with Tony’s parents and to catch her flight back to Utah. It breaks my heart when I look back at the pictures of Makayla’s third birthday. (I am also impressed that we managed to take some pictures).
This was our last “pre-surgery” trip to Cincinnati Children’s Hospital. Brian was hospitalized for a week and this time, the neurology team was not able to completely stop his seizures. He was eventually stabilized, but we all believed that he was constantly having sub-clinical (not visually evident) seizures. We had taken our son to many different hospitals over the previous months and every doctor believed that Brian had one of the rare cases of Sturge-Weber Syndrome that required a hemispherectomy, or removal of the diseased half of the brain, to bring the seizures under control. It was decided during this trip to Cincinnati that we could wait no longer or we would lose our Brian. We were sent home and told to return in one week for the removal of the left half of Brian's brain.
I spent many nights in Tony’s arms as my eyes watered my pillow. We both had so many fears. We knew that this surgery might or might not cure our son’s seizures and we also knew that there was a significant chance that we would lose him during surgery. We supplicated ourselves before our Father in Heaven and prayed for peace. We begged to be given the assurance that we were making the right decision for our Brian. Tony and I both came to the conclusion that if we did not go through with the surgery, we were going to lose him to the seizures. We knew that if we lost him during surgery, we could be at peace knowing that we had done all in our power to help our child.
On October 22, 2005, Tony’s mother, DeAnn, accompanied us to Cincinnati where we were given a room in the Ronald McDonald house across the street from the hospital. We weren’t sure how long Brian would be in the hospital following surgery, but we felt very strongly that Makayla should be close to her family. Staying in the Ronald McDonald house with her grandma, Makayla was able to see Tony and myself daily and she was able to make frequent trips over to the hospital to visit Brian. She still talks so often of the wonderful time she spent with her grandma at the Ronald McDonald house. I don’t know what we would’ve done without DeAnn during that time. She gave herself completely to us for two months and allowed us to stay together as a family. An experience that could’ve been so traumatic for Makayla turned out to be one of the greatest times of her life.
On October 23, we walked across the street to Cincinnati Children’s Hospital at 5:30 in the morning. I held Brian through the registration process and reluctantly handed him over to the nurse outside of the operating room.
Tony and I spent the next 8 hours silently praying for our son. We were so relieved when we were finally taken to the ICU to be with Brian. He was unrecognizable. Swollen like a balloon with numerous tubes and drains protruding from his head, mouth and every limb of his body. Tears of gratitude streamed down my face: Gratitude for the surgical team that had performed such a difficult surgery and gratitude to my Heavenly Father for allowing my son to “make it” through his surgery.
Brian “coded” the next day and was put on a ventilator for the next few days. (I was out of the room at the time, but Tony informed me that is really is like you see in the movies--doctors and nurses running into the room from everywhere!) My little boy did not “wake up” for many days following his surgery and his every breath seemed so labored. I couldn’t even imagine the pain that Brian must’ve been experiencing. We spent more time in the ICU than expected and after a brief move down to the neurology wing of the hospital, Brian suffered a stroke to his cerebellum and was back up in the ICU.
Brian suffered 3rd Cranial Nerve damage during surgery. The doctors didn't know if he would ever open his left eye again. It was closed for a month. It opened, but the eyeball was incapable of moving for another month. He has a dilated eye to this day and although it appears "lazy" at times, we are so grateful that the nerve healed enough to give him some function.
A month into our hospital stay, Brian developed hydrocephalus and went back into surgery to have a shunt placed into his brain to move the spinal fluid from his brain down to his abdomen where the body then absorbs the fluid. It took a while for the shunt to work correctly and Brian experienced so much pain during that time that I spent most nights sitting up in my hospital chair/bed holding him perfectly upright as to alleviate his pain. He had spinal taps performed numerous times a day to try to get the spinal fluid moving, but eventually his spine was so scarred they could no longer extract any spinal fluid. I can’t even imagine what he must’ve felt during that time and more than once Tony wished aloud that it had been him experiencing the pain—rather than his little boy.
Hydrocephalus is excess fluid on the brain. It caused a "sun-downing" effect in Brian's eyes, which is when the pressure is so strong in the head it presses the eyes down. It is said to be excruciating.
When I wasn't holding Brian upright, he had to sit in this chair so as to get the shunt draining correctly. He wasn't allowed to lay down for weeks.
Brian went through an intense 2 months of therapy while we were in the hospital. He had to learn to eat again, how to cry and make sounds, and how to move his right arm and leg (the side affected by removal of the left side of the brain). Brian suffered so many complications post-operatively that we wondered if we had done the right thing in putting him through surgery. He lost vision in the right half of each eye in addition to the damage to his 3rd nerve (an optic nerve) and I can't imagine how hard it must've been for him to lose so much of his vision. We spent Halloween (Makayla trick-or-treated in the hospital) and Thanksgiving in the hospital and two months after Brian entered the hospital (and 2 days before Christmas) we were finally sent home. We couldn’t have asked for a better Christmas gift than to be all together as a family in our own home.
The past three years have been wild and wonderful. The first few months after surgery we were pushing medication down Brian 9 times a day. The first couple of years meant therapy sessions 2 or 3 times a day, 5 days a week. Until this past January, Brian suffered sleep disorders due to the brain trauma that had him awake almost every 30 minutes all night long. We had no idea how severely impaired Brian would be and we did not know when he would ever be able to sit on his own, let alone walk and talk. I would sit in church and cry silent tears as I watched babies roll over and sit up by themselves. I would not cry tears of sorrow, but tears of amazement. I had learned so much about the brain’s capabilities and I was aware of how much goes into the simple act of rolling over or crawling. Each time Brian reached a new milestone, our home was filled with joy. Sitting up happened when he was almost 2 years old. Rolling over happened a few months after that. Shortly before his third birthday, I walked into a room at church and Brian was taking his first steps between Tony and one of our dear friends, Rich. People were standing around watching and as the tears streamed down my face I noticed that there were tears streaming down many other's cheeks as well.
My Brian is now running. He is talking a blue streak (which is a miracle in that the half of Brian’s brain that was removed contained the “speech center”)and all of his therapists and teachers are amazed at how quickly he has progressed. I am seeing him do things that I didn’t know if I would ever see him do—although I always hoped and prayed I would. He is a miracle every single day. We are so blessed to have an incredible medical team and my loyalty will forever lie with Cincinnati Children's. Brian's therapists have all been amazing and they have helped to make miracles happen! The past four years have brought me experiences that I could never imagine in my wildest nightmares, but they have also brought me some of the sweetest experiences that I will ever have. I value every capability that the human body has and I treasure every moment with my children. I have learned that I have a loving Heavenly Father who hears and answers my prayers, and the prayers of thousands of individuals-many of whom I don’t even know- who have prayed on our behalf. I have learned that my Savior suffered all of the pains that my son has suffered and he has held my Brian through his darkest hours. Christ knows the heartache that I have experienced, and the sweet joy that comes as a reward of such heartache. I have learned that people are so good—we had so many people from our church “family” in Georgetown drive the hour and a half to Cincinnati each week to be with us in our time of need. We lived in Georgetown for only a short time before the "drama" started. The people there didn't know us very well, but yet they gave so much of themselves to us. We had family members give up so much of their time to assist us in any way they could. I learned that my Heavenly Father truly does his work on this earth through his sons and daughters.
Life has calmed down much in the past few months. We are only in therapy a few times a week and the doctors appointments have been significantly reduced. Brian’s birthmark has responded better to his laser treatments than his physicians have ever seen, and so far-he has no signs of glaucoma. He is now on only two medications, neither of which is a seizure medication. He is seizure free to date and I just threw away his last syringe of valium(in case of “emergencies”) last week. Brian brings joy to all that know him. The kids in his preschool class adore him and love to “help” him. Makayla chases him and wrestles with him any chance she gets. She waited so long to be able to play with Brian and she is now making up for lost time. Our friends and family watch Brian in awe as they have seen just how much he has progressed. Tony and I find ourselves smiling at each other on a daily basis as we observe Brian doing something else new and amazing. Tony and I are better people because of our experiences with Brian and Makayla is a patient and compassionate child. I no longer find myself wondering “Why, my son?”. I know that my Brian will have a perfect body someday, but for now-I love him just the way he is! Our little family wouldn’t be the same without him and I wouldn’t change him if I could—if I did, then Brian would no longer be Brian.
To learn more about Sturge-Weber Syndrome visit: