Difficult to diagnose, treating Chiari malformation

Jeremiah Humann

September is Chiari Malformation Awareness Month. Chiari malformation is an illness that affects about 1 to 2 percent of the population, according to Gerald Grant, MD, division chief of pediatric neurosurgery.

It’s a serious neurological disorder where the bottom part of the brain, known as the cerebellar tonsils, descends out of the skull and crowds the spinal cord. This puts pressure on both the brain and spine and disrupts the normal flow of cerebrospinal fluid (CSF).

“Chiari is usually detected through an MRI. However, some children with the condition may never develop symptoms, or [they may only] show symptoms in adolescence or adulthood,” Grant explained.

That was not the case for Jeremiah Humann. “During Jeremiah’s Well Baby check at nine months old, his nurse noticed he wasn’t growing as well as he should be. He wasn’t gaining weight or growing in height,” said Heather Humann, Jeremiah’s mother.

The Humanns were referred to endocrinologists to treat Jeremiah’s hypothyroidism. Jeremiah was taking medications, but his condition wasn’t improving. His symptoms were also becoming more severe.

Just before he turned three years old, Jeremiah had an MRI that led to him being diagnosed with Chiari malformation.

“I was in shock. I called my family, and I sat and cried with them,” Heather remembered. “I immediately began doing research so that I could look at options for my son,” she added.

Heather Humann is a pediatric occupational therapist and comes from a family of medical professionals. She had treated a patient with Chiari, so she knew that a Chiari diagnosis means a lifetime of monitoring, surveying and care.

“At night, Jeremiah would cry because he was so exhausted and didn’t want to throw up anymore. He would pray for the pain to go away,” Heather recalled.

During her relentless pursuit of answers and help for her son, she found an online support group for families whose children have Chiari. It was there that another parent suggested that she get an appointment with Dr. Grant at Stanford.

“He just listened. He spent time getting to know us and Jeremiah, and I just knew that Dr. Grant was the surgeon who was going to perform brain surgery on my son,” Heather said.

Heather had recently given birth to her third son. Jeremiah had just turned three, and she knew it was a crucial time in his development. With a young baby to care for and Jeremiah’s symptoms worsening, she worked quickly to schedule Jeremiah’s surgery. Grant removed a small part of Jeremiah’s skull to relieve the pressure on his brain and give his brain more room.

Three days after Jeremiah’s brain surgery, the Humanns left Lucile Packard Children’s Hospital Stanford. This was a welcome surprise for Heather. “Jeremiah was determined to get back home so he could run and play and be a normal toddler,” she recalled.

“And that’s the goal. To get kids back to being kids,” Grant added. “In Jeremiah’s case, surgery was the best treatment to ease his symptoms.”

Grant takes an integrated approach to treating Chiari that requires the patient and family to complete extensive questionnaires. This is a method he learned from his colleague Elliot Krane, MD, chief of pain management at Packard Children’s.

“It’s so important to listen to the child and the family. We ask the parents to answer a series of questions about what life is like for their child, and if the patient is old enough to advocate for him or herself, we ask him what’s important to them,” explained Grant.

Now that Jeremiah is six, he is involved in his care plan and has built a relationship with Grant. During one of his follow-up appointments, Jeremiah asked if he could play football. Grant responded, “Pick another sport. How about soccer?”

Jeremiah participates in school jog-a-thon
Jeremiah participates in school jog-a-thon, 2018

Jeremiah recently participated in his school’s jog-a-thon. He led the class in number of laps completed, something his mother once doubted was possible.

Heather keeps a journal of Jeremiah’s daily activities and his pain levels. If she notices any declines in his functions or changes she check-ins with the care team.

“He is living to best of his ability,” according to Heather. “I am now telling him to pace himself so that he doesn’t overexert himself. I am so grateful to the Packard Children’s team — to Dr. Grant and Nicole [Nicole Hodgeboom, pediatric nurse practitioner for neurosurgery] — for being there for Jeremiah and our family.”


10 Responses to “Difficult to diagnose, treating Chiari malformation”

  1. Jan Steitz

    I met the Humann family and learned of Jeremiah’s journey with Chiari through his marvelous Mom! The pediatric services through Stanford and the health care team. are awesome! I marvel at the parenting support and advocacy he has with Heather and Matt! FB postings showing his determination and accomplishments are inspiring beyond the expression of words! Family, faith and friends are so pivotal and Jer’s journey epitomizes this! Thank you for sharing his story!

    • JulJenkins

      Hi Jan,

      Thank you for your kind words. We’re so pleased to hear your perspective, and are pleased that Jeremiah’s story has touched so many. Wishing you all the best!

  2. Sandy Simpson

    Dr. Grant is the BEST! He has followed my daughter for 13 years now. We originally saw him when he was at Duke and will fly across the US when my daughter needs another surgery! Love him! So proud of Heather Humann for being such an amazing advocate for her Jerbear!

    • JulJenkins

      Hi Sandy,

      Thank you for your kind words. We will send your thoughts along to Dr. Grant and the rest of the care team. Wishing you and your daughter all the very best!

    • Summer

      Concerned mom! Son joined military knowing he had stage 1 Chari malformation. Found out during his HS years. He’s been in 6 months and is experiencing increased symptoms. He was instructed to answer no to everything on the medical questions to get into the service. Now he’s scared to say anything or go to sick call. He said he’d rather die than have to deal with what might be a bad outcome. Which upsets me. Any advice for a concerned mom on how to deal with this?

  3. Katherine Chan

    How can I join the efforts of this awesome Pediatric Neurosurgery team?! After 8 years as an RN for Stanford Neurosurgery, and two kids of my own, I’m ready to join the Packard team!

    • JulJenkins

      Hi Katherine. We’re so pleased to hear your enthusiasm! You can visit our career website to see current positions on the Pediatric Neurosurgery team: http://bit.ly/2RZDrM8, and we also welcome you to reach out to our recruiting division by emailing lpchscareers@stanfordchildrens.org. Thank you for your interest, and we wish you all the best.

  4. Anna Burley

    This journey is wonderful to hear about and learn from as I work with more families and students with similar neurology. Thank you Humann family for sharing your story!

    • JulJenkins

      Hi Anna. Thank you for reading the Humann family’s story, and for your kind words. We’re pleased the story reached others who work in the field of neurology. Wishing you the very best!

  5. Christina Rodriguez

    This is such an encouragement to read. My 12 year old daughter was recently diagnosed with Chiari Malformation and I am looking to find the best care for her. Would love to schedule an appointment with Dr. Grant.


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