When My Daughter Was Born with a Rare Disease I Would Have Given Everything
Last year Lisa Schill with EveryLife Foundation invited me to present about Social Media for Healthcare at RARE on the Road—a conference sponsored by EveryLife Foundation and Global Genes to help patients with rare diseases, their families and caregivers advocate for better research and protocols. My role was to teach them how to use social media to amplify their voices.
Lisa didn't know my story.
When our first daughter Eliza was born she was absolutely beautiful and seemed perfect in our eyes.
After about a week her skin became sallow. We suspected jaundice, so we did what every good parent did at the time. We stripped off her clothes and placed her safely on the window ledge, waiting for the sunshine to do its magic. When that didn’t work, we called our pediatrician, who sent us to Salt Lake City’s Primary Children’s Hospital.
The news was shocking. Eliza had biliary atresia. She was born with no bile duct connecting her liver to her colon. What could we do? The doctor told us there was an experimental surgery that may prolong her life for a time, but the outcome was rarely successful and there was nothing more they could do.
Making the Toughest Decision of our Lives
I was 24 and my wife 20, and we were faced with a terrifying choice. This was long before the Internet. There was no way for us to do our own research, connect with other parents of children with biliary atresia, or join a support group for comfort or advice. At the time we were not close to our families.
We were totally, devastatingly alone, making the most agonizing decision of our lives. After long hours of consideration, rather than subject Eliza to the risk, pain, and isolation of surgery, we took her home and checked in with doctors while we prayed for a miracle. It was not to come. Four months later, as my wife held her in her arms, she died.
We Would Have Given Everything
At times I'm haunted that we would have made a different, better decision if we could have talked to parents in similar circumstances. We would have given everything for such a community.
Our ability to connect with others has advanced light years since that tragic day my wife and I struggled alone to make the right decision. Even with all its warts, social media is an incredible gift — sometimes even a miracle —when it connects people and information at the time of greatest need.
If you provide support for are a patient with a disease or a caregiver or new mom, you have a remarkable opportunity to make a profound difference in their lives.