Erika Sawtelle gave birth to her second child, Connor, a few weeks early. She started to worry about his health a few weeks later when he became infected with a respiratory disease and never recovered.
In an interview with Dearly, Erika said that Connor was hospitalized for 10 days for respiratory syncytial virus as a newborn that ultimately lead to his diagnosis for a more-complicated and common hereditary condition.
It's been a tough morning. We have started our new medicine regime (4 news meds 4x a day!) he's complaining of lots of…
Erika told Dearly:
“He was chronically ill and not growing. We discovered he had a Laryngeal cleft that was causing fluid to fill his lungs. He had it repaired but it never got better. His pancreas started to fail and was on honey thick liquids. We did an MRI to check things further and found out he had Chiari malformation.”
According to the National Institute of Neurological Disorders and Stroke, Chiari malformations are structural defects on the base of the skull and cerebellum where the brain connects to the spine.
Chiari impacts the development of both the brain and the spine and can be inherited. The Spine Hospital suggests that symptoms vary depending on the severity of the malformation. Some patients don’t realize they have Chiari until later in life.
A common symptom of Chiari is headaches, but a few other symptoms in more severe cases include:
- Difficulty eating, breathing, and swallowing
- Developmental delays
- Lack of strength in the arms
- Rapid eye movement
- Poor coordination
Some forms of Chiari require surgery to relieve the pressure on the brain. Medical teams help patients to determine the severity of the malformation and how to care for it, especially as younger patients develop.
So we didn't get good news this week… I was hoping we would finally see the light at the end of the tunnel….
Connor’s case of Chiari is severe. After Connor was diagnosed in January 2015, he went in for his first brain surgery and his symptoms started getting worse.
Erika told Dearly:
“We found out that he had basilar invagination along with a connective tissue disease. He needed to be fused in his back to help stabilize his brain. He now is exclusively tube fed. No liquids and has to wear a cervical collar.”
When Connor was diagnosed, Erika was pregnant with her third child. She gave birth to Charlee after Connor’s first surgery.
It was difficult for the mom to manage the doctor’s visits for Connor’s skull and newborn Charlee. Then, as she wrote on YouCaring, her whole world came crashing down when she realized Connor wasn’t the only one with the malformation.
Charlee was diagnosed with Chiari in October 2016. Her 7-year-old daughter Natalee was diagnosed in February 2017. Erika was diagnosed with Chiari a few weeks ago.
Erika told WCSH 6 that it’s rare for an entire family to be diagnosed with Chiari. She had suspected that she had the same condition, but had hoped it wasn’t true as she felt guilty for passing it to her children.
Happy Fathers Day to all the amazing men in your life!Here's Connors amazing daddy! Share your Father's Day wishes below!!!
Since Connor was diagnosed two years ago, Erika said that her family has been through a total of six brain and three spine surgeries along with many other surgeries and procedures.
It’s been difficult for the mom to manage all of the appointments and symptoms, as Chiari affects each family member differently.
Connor and Charlee have a severe form of Chiari that impacts their development, eating, and coordination. Erika and Natalee experience pain and headaches. The family takes plenty of naps to give the younger two a break.
Erika told Dearly that her symptoms have been getting worse and she is scheduled for surgery sometime in the next year.
Reading his story last night.? he loved talking about his super weapons. He's such an incredible little dude.
She told Dearly:
“I’m trying to spread myself to be able to take care of everyone and myself. My two youngest had brain surgery 10 days apart. So trying to be there for both kids was tough. The traveling we do is very hard for my oldest as she stays behind because she is in school. We travel at least every month. Either to Boston or New York City.”
She’s raising her children to not be defined by their condition and to give back to those in need. Erika hopes to share her story to help other people learn about the illness.
Charlee is scheduled for another surgery soon, which will keep the family in New York for an estimated three weeks. There isn’t a cure for Chiari, so the mom plans to do the best she can as an advocate for her children:
“This is something that will never go away. There is no cure. Surgery doesn’t always work either. Plus with them being so young it will be a battle forever.”
The mom said that her family’s diagnosis has been unsettling, but she refuses to let it bring her down.
“Be grateful for what you do have, even when everything is crashing around you,” she said. “Don’t let any condition define you.”