Moms Lose Precious Memories After Blog Site for Families of Sick Kids Shuts Down


Gabrielle Gerard

For years, CarePages.com was an online community that allowed members to share updates, photos, and full-length blog posts about a chronically ill loved one's journey. But due to declining membership and increased competition, the site quietly shuttered on December 31, according to NBC. Now, CarePages users have been left wondering if they'll be able to retrieve hundreds of entries.

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Virginia Sole-Smith, a 36-year-old health journalist and mom of two from Hudson Valley, New York, had been blogging on the site since her eldest daughter, Violet, was diagnosed with a congenital heart defect at just 1 month old. Sole-Smith spoke to CafeMom about the "roller coaster" she had been on -- not only since learning about her little one's health condition, but in just the hours since finding out that the platform she used to write about Violet had disappeared.

"Basically, Violet's heart condition was not something we knew about during my pregnancy," she explains. "Even though I had a bunch of ultrasounds, it was missed. We didn’t find out until she was about to turn 1 month old. Her blood oxygen level really dropped dramatically, because her heart was failing." 

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Sole-Smith recalls being at the pediatrician's office one minute, rushed to a regular hospital, and then to a children's hospital. That night, Violet had an emergency surgery that saved her life, and the family was told their infant would need three open heart surgeries spread over the first two and a half years of her life. While sitting around the pediatric ICU "shell-shocked and figuring out how to get the word out to people," Sole-Smith was given a packet of information by a social worker and inside was a brochure about CarePages. 

Given that Facebook's privacy settings "are ever-changing and weird" and individual emails or starting a WordPress blog felt like a lot to have to manage at the time, Sole-Smith was drawn to CarePages as a way to share Violet's updates with loved ones. "People had to register to read our pages, and so there was some privacy," she explains. "It helped so much, because people were immediately really wanting to follow our story and were really worried about us, but I could not be fielding tons of text messages and emails. It helped our friends and family who were trying to [communicate with others], because they could all refer to one place." 

Not only did CarePages serve as a platform for sharing practical, logistical details with loved ones, but Sole-Smith found blogging on the site was a useful way for her to process all that she was dealing with as the family navigated Violet's various surgeries and health hurdles. "As a writer, I needed a way to be processing this through writing; we need to keep talking and thinking and processing," she explains. "It became, 'This is where I'm telling our story.'"

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CarePages.com

There were times when Sole-Smith and her husband, Dan, would stay in the hospital for a month or more, and she says she felt like she could easily lose touch with reality. But being able to write on CarePages -- which she did every night during long hospital stays -- was a therapeutic way for her to sift through her emotions. 

"The first year, I realized, 'I'm building a record of what is happening to her. This is a condition she'll live with her whole life,'" Sole-Smith explains. "This is a really important part of her story. She's carrying scars on her body from these surgeries for the rest of her life, and I thought, how great that she'll one day be able to go back, when she's much older and ready, and read what it was like for us to live through that. It might help medically in 20-30 years -- her doctors can have that record." The posts that Sole-Smith wrote also received many comments that she hoped her daughter would be able to read to see just how much she was loved by friends and family.  

Back in October, CarePages sent out an email to members alerting them that the site would be shutting down on the last day of the year. But at the time, Sole-Smith was about to give birth to her second daughter Beatrix and missed the alert, which she guesses may have very well landed in the spam section of her inbox. It wasn't until Friday, January 19, that she attempted to read an old post and found that the site had been shut down. To say she was heartbroken is an understatement.

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"It felt like a new trauma on top of the old trauma," she shared. "To think, 'This was our record, this was the thing that meant so much to us during this horrible time in our life.'" 

Though she had managed to piece together some 40 blog posts, thanks to friends and family and her own sporadic back-up for her other writing projects, Sole-Smith found a support email address for the shuttered site and reached out to find out if there was any chance her years' worth of entries could be recovered. And thankfully, she heard back within a few hours. 

As for Violet: "Our hope is she's now very stable, and our hope is it will be a long time before anything this dramatic ever happens to her again -- knock on wood -- maybe never," Sole-Smith shares. 

Of course, she's learned so much through the heart-aching experience, but when it comes to CarePages, she feels the takeaway is that "communicating during times of crisis is really important [and] being able to draw on your community." 

Prior to retrieving her writing, Sole-Smith admits she had been thinking, "What it helped me get through during that time was still so valuable, and while it would have been heartbreaking to lose everything, at least I had it as that communication tool when I needed it." While that's so very true, it's beyond heartening to know that she's now in possession of those many deeply personal blog posts. 

Sole-Smith encourages other CarePages members to write to CarePages support at support@support.carepages.com. With hope, their all too important words and memories can be recovered, as well.

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