(Arterioveneous Malformation) was caused by a condition called HHT (Hereditary Hemorrhagic Telangiectasia)

Blessings, Fear and Tragedy

My name is Jason. My wife Angie and I live with our beautiful family in Tennessee. If you have read the “Our Story” section of this blog you will see that we have five children. We are a family that is completely rooted in our faith in God. While we feel that we are extremely blessed we have also endured more pain in the past few years than should be humanly possible. Through it all we have held together. This blog will tell our story.

On Tuesday July 26th 2005 the greatest fear that my family could ever have came true. My wife Angie who was eight weeks pregnant had taken our two daughters Mary Owen (Nineteen Months Old) and Madison (Four Years Old) to a play at a friend’s home with their two daughters. Our children were all happily playing together when Mary Owen collapsed. She was not breathing or responsive to the screams of my wife. An ambulance was called and arrived on the scene within minutes. Noticing the critical nature of my daughter’s situation they rushed her to Vanderbilt Children's hospital in Nashville Tennessee.

I received a call at about 1:30 pm from the friend telling me what had happened to my baby girl. They told me that the ambulance was in route to the hospital and that I needed to get there as fast as I could. Upon my arrival at the hospital I found my wife standing beside our daughters still body. Doctors and emergency room staff were racing around in an attempt to resuscitate and save our little girl.

Initial tests suggested that there was bleeding within Mary Owens brain. Over the next several hours the doctors and staff attempted to relieve the pressure in our daughter’s brain that was caused by the bleeding. They were unable to save her. On Wednesday July 27, 2005 with family by our side we held Mary Owen in our arms while she went on to be with God.

This earth shattering event could have been prevented. The ruptured blood vessel or AVM (Arterioveneous Malformation) was caused by a condition called HHT (Hereditary Hemorrhagic Telangiectasia). This is a hereditary condition that also afflicts my wife, daughter Madison, son Maddox, mother in law and sister in law.

My wife was treated for this condition during her pregnancy with Mary Owen. She had an abnormal blood vessel in her lung that was treated and cured. We had our four year old daughter Madison screened for this condition in 2004. The screening found that she had a 16 centimeter abnormal blood vessel in her brain. This was a sizable AVM that would require surgery to reverse. Mary Owen had been screened back in December of 2004 and the findings were the same. Mary Owen had a 6 centimeter abnormal blood vessel in her brain. We were told by our doctor that the size of Mary Owen’s AVM was insignificant and that they only recommend treatment for abnormal blood vessels that were greater than 12 centimeters in size. We were relieved to hear this news. We thought at that time that we would only have to focus our efforts on treating our older daughter Madison.

For Madison’s treatment we were referred to the Hospital for Sick Children in Toronto Canada. We had been working with the hospital and our insurance company for the last several months in an attempt to get care for Madison. We were initially told by our doctors that there was no need to rush into Madison’s treatment. They said that we had plenty of time to set up her care. These are the same doctors that told us that Mary Owen would not need any care for her AVM. They were wrong, and now she’s no longer here with us. We knew that we needed to expedite Madison’s care while also being careful with her emotional well being as she had watched as her baby sister collapse. We were not sure how to explain to her that she would need care for a similar condition.

We knew with Mary Owen’s passing we had no time to spare in getting Madison to Toronto for her operation. We had people all over the world praying for our daughter. Angie and I were an absolute wreck. We told Madison that we were going to Toronto to take her on a trip to Niagara Falls. So that she would not be scared by going to the hospital I also told her that we were going to visit a doctor friend of mine while we were there and that he had some really cool band aids that he could put on her knee which she had recently skinned up in our driveway. I did not want to lie to her but I felt that I had no other choice.

When we arrived at the hospital we were greeted by our doctor. As I had already talked to him about the story I told Madison he immediately talked to her about the boo boo on her knee. They then gave her some medicine that would make her go to sleep in preparation for the surgery. A feeling of complete terror washed over us as they wheeled her away. Even the fact that she was in the care of the best doctor in the world for this type of procedure was of little comfort. We started praying and pacing. Then suddenly I realized that I had not brought the cool band aids that I had bought to put on her knee in the recovery room with me. I thought “How could you forget them”? I was thinking totally irrationally. I told Angie that I needed to run down to the gift shop to get some so that Madison would not know that I had not been truthful with her. Angie told me that I was acting crazy but I still left to hunt for them.

The band aids were very hard to find. Once I had them in hand I raced back to the elevator to go back up to the floor where Madison was having her surgery. Just as I got to the elevator Angie walked out. Her eyes were filled with tears. I was stopped in my tracks and stricken with fear. I heard her tell me “She’s Gone”. I panicked and felt like I was going to faint. Noticing that something was very wrong with me she grabbed me and asked me if I was ok. She looked me straight in the eyes and repeated what she initially said to me except this time I realized that she did not say “She’s Gone” she said “It’s Gone”. I asked her to explain what she was talking about. She said that the doctors had started the procedure but stopped when they noticed that Madison’s AVM was gone. We raced upstairs and the doctor and his assistant took us in a room to talk. He looked shocked. He told me that in all his years of practicing medicine he had never seen anything like this before. The AVM that was so great in size was completely gone. He said it actually looked like there was never one there even though all of the tests and imaging had conclusively confirmed that there was. I knew right then that we had received a miracle from God. God had healed our sweet Madison. There is great power in prayer and we have seen that power first hand.

Three years have passed since all of this has happened. Madison is doing great. We have since been blessed to add our sons Morgan and Maddox and soon to be adopted daughter Macy to our ever growing family. Even with all of these blessings around us we have still had a very difficult time dealing with the fact that she is not here but we know that we will all be with Mary Owen again. Until that day we will take care of one another making sure that we are humble, thankful and faithful for the amazing blessings that we have received. This is Our Place of Grace…

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for my friend Rebecca and her family. Here is the latest:

"...Rebecca and Jacob welcomed Molly Ann Mutz Friday morning at 5:27am. Molly didn’t breathe for 4 minutes and her oxygen levels were all wrong when she was born. They immediately took her to NICU. They said she had a significant heart murmur and ran various tests, etc.

Since then Molly has been transferred to a Children’s Hospital. Molly has Pulmonary Hypertension which is making her little body “extra sensitive.” So even a bath (or a wipe down) discomforts her. However the PH should go away eventually.

The main problem that Molly has is AVM (Arteriovenous Malformations). AVM’s are masses of abnormal blood vessels which grow in the brain. They consist of a blood vessel “nidus” (nest) through which arteries connect directly to veins, instead of through the normal elaborate collection of very small vessels called capillaries. As a result, blood that is pumping in Mollyʼs body cannot keep its oxygen level high enough as a significant portion of that blood does not re-circulate back through the heart and lungs in time to get fully re-oxygenated. She is on a breathing tube to help regulate her heart and to keep the oxygen levels where they need to be. She has a 2nd tube in her mouth that goes to her tummy to help keep air out of her little tummy..."
Keep reading...

Becca is a dear friend of mine, and my heart aches for her and Jacob right now as they walk this road. Please keep this dear family in your prayers.

AVM Chance meeting leads to face-saving surgery

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Dr. Rick Hodes was used to hearing "no" when he opened his laptop to show brain surgeons pictures of the young Ethiopian woman. An extraordinary case, they would always agree, but there was nothing they could do.

Although he lives and works in Ethiopia, last October Hodes was in town for a fundraiser and stopped at a St. Louis Park synagogue to pray. He started chatting with Dr. Eric Nussbaum, who was there studying with the rabbi.

"Let me show you some of my cases," Hodes said, as he always does when he meets someone who might be able to help the young Muslim woman with the carefully arranged headscarf pictured on his laptop screen. Those around them who weren't doctors recoiled at the photo. But Nussbaum was fascinated.

By chance, Hodes had bumped into one of the few people on Earth who could the do the brain surgery this young woman needed.

In a way, Nussbaum had worked his whole life toward this moment. It was why he left the University of Minnesota to set up shop in little St. Joseph's Hospital in St. Paul, which was on the brink of closing.

It was why he established a super-sub-medical specialty center for complex brain surgeries that is now gaining a national reputation. It is why he wears a beeper and rarely takes a vacation.

When he saw the photographs in the dim light of Bais Yisroel synagogue, he was ready.

"We could take care of this," he told Hodes.

A rare specialty

Nussbaum, 40, is a rare neurosurgeon, an expert in the brain's blood vessels and benign tumors that originate below the brain in the skull.

"Ninety percent of neurosurgeons do spines," he said. "I don't."

His uncle is the same kind of surgeon. As a child growing up in Maryland and New York, he always wanted to be like that uncle.

Nussbaum came to the University of Minnesota hoping to do the work he loves -- repairing gossamer-thin blood vessels and delicately dissecting out tumors. But he was expected to do all kinds of neurosurgery there

Nanay had a stroke

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As most of you probably already know, Cherrie's mom Anita (Nanay) had a major brain hemorrhage on Saturday night at about 6 o'clock. It turns out that she has a large AVM (Artereo-Venous Malformation)just like Devin. These malformations have weak walls which is why it hemorrhaged.

At first she didn't have any symptoms other than a sudden excruciating, debilitating headache. For about fifteen minutes we were with her, talking to her, trying to figure out what was wrong, we even took her blood pressure, but she didn't have any other stroke symptoms, just the headache. So we were left to either dial 911, run her to the emergency room (about 15 minutes away) or run to the insta-care clinic in Bountiful (about 10 or minutes away). I was afraid of going to a busy emergency room and getting ignored as the "Lady with a headache", so I left Cherrie and the kids and drove with Nanay and Tatay to the Insta-care clinic. Nanay was still talking to us the whole trip, but as soon as we started to get out of the car, she stopped talking and starting mumbling. She had lost all strength and could barely stand up. We hurried her into the lobby, and we were lucky that nobody was there. Just as we got inside, she started vomiting, and lost all strength in her legs. I yelled at the receptionist that she was having a stroke and everyone in the clinic jumped on it. Within a minute she was on a gurney and being evaluated by two doctors and several nurses. They're response was awesome, and they got her stats and info as they started loading her into an ambulance. It just so happened that our very good friend, Alili Perez, was also in the clinic at that moment, and she came over and got my keys to lock my car and take Tatay home while I climbed in the ambulance with Nanay.
We drove to IMC in Murray while the ambulance team stabilized her and contacted a stroke team at IMC to be ready for us. They put did a CT scan to see if the stroke was a "bleeder" (hemorrhage) or a clot. It was a bleeder, but they also thought that there was something else there too, so they put her on medicine to help control the brain inflammation and keep her blood pressure low while they did further MRI's and angiograms to see what was going on. They found that she had an AVM which sort of changed all the treatment options. If there had been no AVM they would have tried to get in and relieve the pressure immediately, but with an AVM they needed to stabilize her and let the bleeding stop on its own so that they could evaluate where to cut without causing more uncontrollable bleeding. On Monday they performed an angiogram/embolizaton (just like on Devin), where they blocked of the major feeder veins to the AVM.
On Tuesday they performed surgery to remove the clot formed by the blood which had pooled as well as the veins and arteries of the AVM itself. She is still recovering from that. She has weakness on her right side and still isn't able to talk, but the doctors are hopeful that she will make a pretty good recovery and be able to regain some of those functions.
Cherrie and I feel really blessed. We were supposed to go down south for two days to celebrate Cherrie's graduation from the dental assisting program, but Cherrie had a feeling we shouldn't go, that something might happen. Wow was she right. I can't imagine what would have happened if we had been 4 hours away when this happened.



What a change from the way she looked a week ago.

posted by Kirk Benge @ 8:42 AM

that sucks!!!

i do have an AVM...

i was diagnosed with an AVM about 5 years ago. I had it Gamma-Knifed. The surgery was easy... if it would have worked i would not be writing this today...

Thats why i post so much on them.
It seems that where it was they thought it was gettable...

What it has damaged is my ability to wright and move my Right side.

it is funny, i was going to schedule an MRI, when it sprung a leak...

so now you know....

I will right a little more when i have more time.

Male ,41 years of age.
pic is a joke... ha ha ha

in the mean time here is a few things from Amazon.


go ahead... i really like them... you may to.

oh ya, it has been nearly 3 years since it sprang a leak... I think?

My friend, Katherine Wolf

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I can’t believe that I have not posted this before, so please forgive me. A friend of mine and my wife’s, Katherine Wolf, is currently recovering from a severe brain bleed caused by an atrioventricular malformation, or AVM. From my limited knowledge of AVM’s, they are present long before they actually present themselves medically. Katherine is married to Jay Wolf, a friend of ours from Samford University. Jay’s father is Senior Pastor of First Baptist Church Montgomery in Alabama, a church that has done some great, great things in the city and in the state. They also have a seven month old son, James. You can imagine how hard it is for your wife of three years to be in ICU for now six weeks. You can also imagine the thoughts going through Katherine’s head. She can’t feed or take care of her baby. She can’t take care of her husband, who just finished law school and is looking for a job.
http://www.caringbridge.org/visit/katherinewolf

Please remember Katherine, Jay, and baby James in your prayers.

Sh!t For Brains AVM Blog

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For Everyone Who Wishes They Weren't Interested in Arterio-Venous Malformations and Brain Surgery

Is That a Giant Sucking Sound, or is it Just Me?

There are international agreements governing trade, and countries who are parties to the agreements take on certain obligations that prevents them from erecting barriers to free trade. For example, customs rules. A country must agree to publish instructions on what you must do in order to get things through customs. Sounds simple, but there is a reason the rule was needed. In order to protect domestic industries, countries come up with clever and sneaky ways to foil trade. Many only published lists of things that you can't do if you want to get things through customs. An affirmative idea is infinitely more powerful than a negative. Imagine if you asked my how to roast a chicken, and I said, "Don't boil it." Not very helpful, although technically true.

Lately I have been inspired by this concept as it relates to personal healing, both for my brain and my spirit. I don't want my AVM to bleed, I don' want to have gamma knife again, I don't want a craniotomy, I don't want a seizure, a migraine, or an anuerysm.

These are all really general thoughts and fears, diffuse and tress induceing. They don't really address my hopes, my wants or desires. From now on I am trying to channel my thoughts into the affirmative. I want the AVM to be obliterated. I want my brain to heal. I want to relax. If I give my brain clear instructions, I am hoping to remove the barriers to healing. A treaty, if you will, to root out the sneaky processes that undermine progress. And while Ross Perot might disagree with my logic, I'm hoping the benefits will lead to better relations between my body and mind...after all, they're stuck being neighbors, they might as well get along.