Friday, August 01, 2008

(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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