“It’s baffling:” Five-month-old baby battles rare medical condition

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WAUWATOSA (WITI) -- A Menomonee Falls baby is battling a rare medical condition -- and needs your help writing a happy ending to her story.

Before Vivian Johnson was born, ultrasounds detected that she had major brain abnormalities. After birth, she was diagnosed with Chiari Malformation -- an extremely rare congenital disorder. It causes the brain to fall to the back of the skull and put pressure on the spinal cord.

"It's baffling, things we've heard and stumped and unique. Not another case to look at to compare it to. No textbook to go off of," said Clay Johnson, Vivian's father.

Vivian Conquer Chiari

Vivian Johnson

Vivian is now five months old. She was born at Children's Hospital of Wisconsin and hasn't left. Bringing her home is the goal.

"But when there's no answer or no definite question to answer, it's hard to keep that in perspective," said Sarah Johnson, Vivian's mother.

Vivian has had two brain surgeries and countless MRIs. She now has fluid building up in her spine -- and has what doctors are calling episodes that cause her to lose consciousness and stop breathing.

"Without a date or timeline or end in sight, how do you take it more than one day at a time? I know it's cliche to say that," said Clay Johnson.

Vivian's parents rotate spending nights at the hospital so their daughter is not along. Both have had to cut back on work to care for her.

Meanwhile, there is a fundraiser to help Vivian's family pay for her ongoing medical care. That will be in April. You can also donate to Vivian's cause by visiting her GoFundMe page.

10 comments

  • Kimberly

    Look up teamxavierdrake drake on Facebook my 3 year old son has this condition. I have info on there and feel free to pm me I know how scarey it is. I’ll try to help with any ? S you may have. She is in my thoughts.

  • Cheryl Ferguson

    My 15 year old also has Chiari Malformation. She had decompression surgery in 2012. She has her struggles, but she also has her good days. Stay tough. There are a lot of Chiarians out there to lend strength during those hard times.

  • Karen Tannreuther

    Unfortunately Chiari Malformation is not so rare anymore, we are hearing the ugly more and more everyday.
    My five year old grandson was also born with it, he has been decompressed three times.
    A lot of drs and people do not take CM serious, it is serious, CM can take your life, a person who suffers from CM goes thru hell, no one of any age should have to suffer and go thru things that I see my grandson endure.
    I will keep this baby and it’s family in my prayers and please everyone educated yourself and others about CM and help us push for funding for a cure.
    Please visit http://www.asap.org
    This organization was an answer to our prayers when our baby was diagnosed, everyone is so awesome and so helpful.
    If you or anyone you love is a zipperhead ASAP is the right organization for you.

    • Beth Nguyen (CEO) of Worldwide Syringomyelia & Chiari Task Force Inc.

      We would like to provide you with some help as well! There are excellent organizations out there such as ASAP that raise awareness and money for research on Chiari and Syringomyelia. The work they have done is amazing! Our organization was started by myself because as a registered nurse with Syringomyelia I discovered there were few physicians who know what it is despite over 200 years of research. Our organization provides direct help to the sufferer such as help with prescriptions, durable medical equipment, and many other resources to children, adults, and canines all over the world!! Join our 24 hour online support group today where you can receive emotional support while you are going through this difficult time with your precious baby!! We are here to support you as well!! I look forward to getting to know you better! You are not alone….there are thousands of men, women, and children all over the world with Chiari.

  • Carol Kerr

    This baby is not battling an “extremely rare” medical condition. I advocate for Chiari patients on a daily basis and I can assure you the condition is EXTREMELY COMMON!! It’s rare to find a doctor or hospital that knows how to treat it properly. IF the surgeon did not resection/cauterize her cerebellar tonsils, or took too much skull, she may be worse than before the surgery! There is a wonderful pediatric neurosurgeon in Michigan that understands brain stem compression and knows how to correctly perform post fossa decompression surgery. Please seek the help of Dr. Holly Gilmer-Hill. She is the head of pediatric neurosurgery, but she accepts adults also. Michigan Head and Spine Institute 3577 W 13 Mile Rd #206 Royal Oak, MI 48073-6769 Phone: 248-784-3667 Fax: 248-784-3676 She also has videos on YouTube. Please feel free to contact me through facebook if I can be of assistance to anyone. One love!

  • Laura

    It is not that rare and there are other cases of babies having it. If your hospital says it is that rare you need to find another doctor and hospital that knows how to treat it!

  • Heather Cowart (@HeatherCowart2)

    There are many many cases of Chiari its not so rare anymore but others just don’t know how serious this is unless they have experienced it trust me I know also first hand I have it and after 2 brain surgeries I recently find out my son has it as well and will be having brain surgery as well. It’s horrible, more research is needed it’s not easy!!

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