Rachael Huddleston

Rachaels Story

Born February, 2004

August 18, 2004 : I took my baby to her 6 month appointment, sad about putting her through immunizations. Little did I know the worst was yet to come. The nurse took all of Rachael’s measurements and shortly after the doctor came in, obviously upset. Rachael’s head circumference was in the 95 th percentile.48 cm at 6 months. That is a 1 ½ year old’s head size. Right away she ordered an ultra sound and within the hour we learned she did indeed have hydrocephalus. She was scheduled for an MRI first thing in the morning. Scared about the shunting, I still was ignorant on the monster that was about to terrorize our lives.

August 19, 2004 : How could this be happening to my little girl? A VGM aneurism! We were taken by ambulance to the PICU of St. Joseph’s Hospital here in Phoenix , AZ. I called my husband in Camp Pendleton , CA to meet us there.

August 23, 2004 : All these days hooked up to machines and IV’s.the time finally came for the dreaded embolisation. It was a success! Our little baby was strong. Getting off the respirator was difficult and the infections were tormenting but we finally felt like everything was going to be okay.
April 27, 2005 : Today Rachael is 14 ½ months old and her brain is slowly but surely making its way back to normal. She won’t need a shunt. She has physical and occupational therapy for her developmental delays. She is a happy and beautiful baby girl. Now we just want to make it through her angiogram in August of this year. Wish us luck!

Sept. 1, 2005 Rachael had her angiogram. Her single treatment a year ago was a success. She is cured! She is 19 months and still can’t walk or crawl, but she is definitely showing improvement

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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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4 Responses to Rachael Huddleston

  1. Rina Abraham says:

    Update on Rachael

    It’s been a while but I needed to update. Rachy ended up getting a shunt in Feb 2007. We were really hesitant but we went through with it. It was one of the best decisions we have ever made. Her progress is phenominal. Her brain’s volume has more than doubled and she’s walking, running, and climbing like never before. We didn’t even qualify to get into a special preschool, which is awesome! She is now a happy 1st grader.

  2. Melissa says:

    Thank you for posting this. I just found out last week that my 10 month old has a VGM. I found out in a very similar way, taking him in for a checkup with some concerns that he may have some minor gross motor delays, little did I know of the hell to come. We are currently waiting for our call for his embolization to be done.

  3. Jenny says:

    Hi Melissa,

    My thought and paryers are with you, you are very right when saying the “hell to come” its not a easy situation to be in espically as parents! Please keep us updated with your progress!! lots of love xxxx

  4. Rina says:

    Ladies,

    Hope all is well. Rachael’s appendix ruptured and we had to remove the shunt to rid of the infection. After monitoring the pressure in her brain, she ended up not needing it anymore. God bless all of our brave little ones.

    Rina

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