When we received the results of Ben's MRI in November 2004, we never really knew what we were in for. As I listened to the report over the phone, writing everything down frantically, the ramifications of what I was hearing did not fully sink in. So as I wrote down AVM in the list of everything, I really just passed it off. The scariest words to me at the time were angiomatosis (Sturge Weber). After I hung up and looked down at my notes, the AVM finally hit home. WHAT??? Really at first I thought I had written it down in error. I called our pediatrician back to clarify. "Did you say AVM?" "Did I write that down correctly?" Yes. "In his Brain?" Yes. "AND angiomatosis?" Yes.

So the doctor says...I'll be writing referrals for a neurosurgeon to start with. Then a referral to a geneticist, a neurologist, and a developmental pediatrician. The whole time there's this voice rambling in my head saying...."I can't do this, I don't know how." This was soon replaced with anger and frustration. Finally, I became resolved to do everything in our power to get the best recommendations for Ben's condition.

Within a week our family was sitting in the office of a neurosurgeon. It was at this time that the words Sturge Weber were first spoken. Ben's story of Sturge Weber is found on the previous page of this journal. The most pressing concern the doctor had was the AVM. He recommended a cerebral angiogram. The results, he said, will tell us what our next step will be. He said for most cases in a child this young, we like to keep an eye on the AVM. The best thing would be to let him get a bit older before we do any invasive procedures. Until then, we'll do a yearly angiogram to track any growth.

On January 7, 2005 (just 1 month before Ben's 3rd birthday), we brought Ben to Minneapolis for his angiogram. This procedure was done by the interventional neuroradiologists at Abbott Northwestern. Abbott does not generally treat children, but in this case the doctors that we needed were only available at this hospital. It became a joint effort with Minneapolis Children's Hospital. Ben was admitted to Children's. The pediatric anesthesiologists at Children's prepared him for the procedure. When he was asleep, they brought him to Abbott for the procedure. After the procedure we returned to Children's for recovery. The procedure went very well. Ben had to remain still for 4 hours after the procedure. Somehow...he DID! If you knew our Ben, you would be amazed. He doesn't stop for anything.

Two weeks after Ben's angiogram, we received the diagnosis and recommendation from the neurosurgeon and the radiologists. Ben did not have an AVM, but rather an AVF (arteriovenous fistula). The two malformations are similar, and will look similar on an MRI film. The angiogram was able to differentiate the two. They wanted to perform an embolization now. They thought that Ben's situation warranted early intervention. Not the answer we were hoping for, but at least we knew what we were up against now.

So, the scariest day of our life was to become February 8th. Ben was scheduled for a coil embolization. This procedure was done by placing a catheter in the femoral artery in the groin area. The catheter then gets routed up to the point of the AVF. When they get to that point they use tiny platinum coils to block off the abnormal artery. The procedure is minimally invasive compared to some of the other treatment options for an AVF, but still carries risks. The most predominate risk being a stroke.

My husband and I did just fine until Ben was anethesized. At that point...all the brave smiles from the last 2 months were gone. It was time for Mommy and Daddy to cry. For the next 2 hours we paced, worried, talked, and waited. Then finally Ben was done. The embolization a success!! The AVF was 99% occluded. We waited again until he was stable enough to return to the ICU at Children's Hospital, as the embolization was also performed at the neighboring Abbott Northwestern Hospital. The two hospitals are connected by a tunnel. Every minute seemed like an hour. Finally, 5 hours after we put our son into the hands of the doctors we had him back. As we walked into the pediatric ICU to see Ben for the first time, there was a huge sense of relief. We had our baby back.

Ben spent one night in the ICU. At some point he started running a fever. Because of the nature of his procedure, only Tylenol could be given to combat the fever. Unfortunately, it was not effectively bringing it down to normal, but rather bringing it down to acceptable. In the first 24 hours after the procedure, Ben was awake and coherent for about 45 minutes. His lungs became congested, so he was put on an antibiotic. He slept and slept. At one point his blood pressure reading was extremely high. The nurse attempted the reading 3 times, and the third time it was normal. Such a short moment, and they said it was a glitch in their equipment. I still wonder, however, if it was a true reading and if it could have been that one small clue as to what was to come. After one night in the ICU, Ben was moved to another room. Ben spent his time sleeping and battling the fever, and Mommy and Daddy spent their time Ben watching. Finally on the 2nd morning Ben was awake, fever free, and HUNGRY!! This was the best sign of all. As each doctor or nurse practitioner came in to sign off our release, we felt better and better. We had licked this thing, and we were going home. One NP finally asked if he had been up and around yet. No. So let's get him out of bed. We got him out of bed, and steadied him a bit. He COULD NOT walk!! Now, up until this point all of his reflexes were fine, and his memory was fine. He had moved every limb and passed every test. However, when it came time to walk we realized that he had lost both strength and muscle coordination in his left side. We were heartbroken, and felt completely defeated. Ben was just plain confused.

We could see the uncertainty in his eyes. He had never known a time that he couldn't run and walk, and all of a sudden it was taken away. This realization was the worst of all for us. How could we explain this to a 3 year old? But most of all.....What Happened to Our Baby???

"What happened??" Nobody was quite sure what really did happen. An emergency CAT scan showed no signs of bleeding or swelling, and it left only one option. Ben had most likely suffered an infarction. Simply put, a minor stroke. So not only were we not going home, we had to discuss physical therapy, occupational therapy, aspirin therapy, and then figure out what we may need once we get home to accomplish all of these things.

This was the one moment in my life that I felt like I had lost control. I just could not take one more obstacle. After talking with the doctors, I simply walked outside of the hospital, stood on the sidewalk, and cried. I didn't know how to do this. I felt like someone had just ripped my heart out and stomped on it. This beautiful child...my beautiful child....my husbands first born.....how could this happen? And the guilt? Not just for feeling this way, but knowing that others go through so much more.

Little did I know that while I was out feeling sorry for myself, Ben had other things on his mind. He seemed determined to play! Determined to walk! Determined to ride that tricycle! While we spent the day discussing all the ramifications with all of the specialists, Ben was improving at a miraculously rapid pace. At 9 a.m., Ben could not walk. At noon, he could not pedal the tricyle without his foot dropping off the pedal. At 2 p.m., he stumbled across the playroom on our floor without help. By 5 p.m., he was pedaling all over the 6th floor. And by bed time.....he was pushing a toy grocery cart across the room without help. And just ONE week later, Ben had regained most of his muscle control back. As I write this, it is early April 2005. Ben has been in physical therapy twice weekly since February. His muscle coordination is nearly 100%, and he is left only with fatigue of his left side after continuous hard playing. Truly an inspiring child!

It never occurred to Ben that he couldn't do it. He just needed to figure out how to make it happen. No amount of medical opinion or intervention can alter or change the innocence and persistence of a 3 year old child who will simply not accept defeat. We are continuing treatment for Ben's AVF, and much has changed in our lives in the past year. Ben's AVF seems to be just as stubborn as he is. Many important decisions were made this year in our family. After some frustrating news, we have found treatment for Ben in New York City. Why we made this decision is in the next chapter of Ben's on going journey.

Next - Ben Goes To New York!

Home

Ben's Story Page 1 - The Birthmark

Ben's Story Page 2 - Finding the right Doctors

Ben's Story Page 3 - Sturge Weber Syndrome

Ben's Story Page 5 -Ben Goes to New York

Ben's Story Page 6 - Parkes Weber?

Ben's Birthmark Progression

Ben's Laser Treatments

What is Sturge Weber?

What is a Port Wine Stain?

What is an AVM?

What is an AVF?

What is Parkes Weber?

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