Dixie Marie Tillman

Dixie’s Story

Born November 8th, 2009

Our baby, Dixie Marie Tillman, was born at 38 weeks on Nov 8th, 2009 at 9:54 pm at Highlands Medical Center in Scottsboro, Alabama. The pregnancy was normal and the delivery was also a normal vaginal delivery. However, when Dixie was taken to the nursery to be weighed, bathed, and checked, it was discovered that her oxygen level was low. Dixie was not allowed to come back to her mother’s room. The next morning we were told that an ambulance from Huntsville Hospital was coming to get her to take her to their NICU because of a possible heart murmur. This was the beginning of a 4 week long nightmare.

We were not allowed to see Dixie for several hours while they ran tests on her. We were definitely not prepared for the news we were given. Dixie had Vein of Galen malformation and Vanderbilt Children’s Hospital in Nashville, TN was sending their Lifeflight Critical Care ambulance to pick her up. We were told how rare and serious this was and would require brain surgery. Our neurosurgeon would be Dr. Robert Singer.

We were heart-broken and scared as that big ambulance drove off with our baby. We all drove home to pack and meet her in Nashville. Dixie was admitted to Vanderbilt on Nov 9th 2009. After undergoing many tests, it was decided to go in with embolization using about 3 yards of coil on Nov 11th. Because of Dixie’s Vein of Galen malformation, she was having respiratory distress and high-output heart failure. After the embolization, her heart improved. However, on Nov 16th, a CT angiogram of the head showed persistent filling of the Vein of Galen. Her condition began to worsen. We were devastated. So many people were praying for our Dixie.

On Nov 17th, our two neo-natologists called us in for a care conference and recommended that we just make Dixie comfortable in a private room and stay with her until she died. Because, in their opinion, she had no quality of life because of the brain damage that appeared on her head scans. We could not accept this recommendation and give up on her without doing everything we could to save her. Our neurosurgeon, Dr. Singer, was away at a conference, but he hopped on a plane and came back. I can’t say enough good things about this man. He was great to us while we were there. On Nov 18th, a second embolization was done on Dixie adding more coils and onyx this time. The second surgery was a success. Dixie still had more fights ahead of her. Her blood pressure stayed high, she got a fever they thought was from an infection, and they had hard times placing PICC lines and IVs. But, with each setback, God answered prayers and fixed them all.

On Dec 4th, 2009, Dixie was discharged from Vanderbilt to come home. She was released with no medications, no high blood pressure, and all normal constitutional exams. She was home in time for Christmas.

Dixie is now 7 months old. She loves to eat and be held. She likes to swing and smiles when we play patty cake with her. We still don’t know what her developmental delays might be because of the brain damage. She is a happy baby most of the time. We are enjoying loving her and watching her grow.

We are just praying that God will continue to heal her brain and help us to find the right people to help her through everything that lies ahead for her. We had an appointment in Birmingham April 26th, 2010 about her vision. It seems she doesn’t focus on things the way she should. She doesn’t use her hands as she should either. She clinches her fists tightly a lot of the time. We had an appointment at Vanderbilt on June 24th with a developmental doctor. We were told that Dixie’s development was that of a 2 month old and there is no way to tell exactly what will be her outcome. Her vision and her high and low tones in her limbs seem to be the problems with her development.

As more developments come, I will update Dixie’s story. Please remember Dixie in your prayers.

Dixie’s Grandmaw
Tina Jackson

Dixie’s mom, Kelly, and I read the family stories from this site and were touched by them all. If anybody else has had any vision and tone problems from this, we would love to hear from you and how things turned out.

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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One Response to Dixie Marie Tillman

  1. Amber Napier says:

    HI, Dixie is gorgeous. My daughter, Juliet was also born with VoGM. She is now 2 and 1/2. She also has a vision impairment and physical difficulties. Through vision therapy and physical therapy, she is now walking and we are working on transitions of getting up and down by herself. Her speech is delayed, but compared to a year ago, she is doing very well. She has had 12 arterial embolizations at UF in Gainesville, but then we had to seek care elsewhere as her condition was not improving the way they had hoped. We went to UCLA, los angeles and met with Dr. Fernando Vinuela. He has since performed 2 venous embolizations (in the vein itself) and it has been an absolute miracle. Everyday she is progressing and she is a happy little thing. Her vision continues to improve, in fact everything does since her last procedure in August 2010. I hope Dixie continues to improve and I will most certainly add her to my prayers for Juliet’s (and Dixie’s) spontaneous recovery. God Bless.

    Amber Napier

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