How a Scary Bleeding Episode Led to Gratitude for Our Family
Years ago, an inhibitor caused serious issues for this columnist's young son
When my youngest son, Caeleb, now 17, was 11 months old, he had a bleeding episode that shook us to our core.
We’d recently moved to New Mexico from Houston and didn’t yet know our new medical team. Because my wife, Cazandra, had promised to play oboe at a church in Houston for Christmas, she took Caeleb with her so he could be circumcised by the hemophilia treatment team there that knew us.
Cazandra told me they’d return in time for the Christmas concert at our new church in Deming, New Mexico. I was the music director and looked forward to sharing the season’s music with our community.
I spoke with Cazandra after her concert as she headed to the Houston airport to fly home. I told her to have a safe flight with Caeleb, then turned my phone off to give my full attention to last-minute details. Everything appeared fine as I prepared to conduct children and adult choirs, specialty groups, and handbell ensembles.
As I walked into the church, two choir participants stopped me in the hall and told me that Cazandra had just contacted them saying she needed to speak to me. My friends said something had happened at the airport, and my wife couldn’t board the plane.
At first, I dismissed their claims and thought the whole thing was a joke. But they assured me the situation was serious and I needed to call her immediately.
I quickly ran to my phone and called Cazandra, half expecting her to come on the phone laughing. Instead, I could hear the terror in her voice when she answered. She told me that even though the medical team that circumcised Caeleb had given him a dose of factor VIII before the procedure, his diaper had filled with blood. She realized the extent of the damage when she tried to change him before boarding the plane. Cazandra told me that she’d canceled her flight and was taking a taxi back to the hospital.
I hung up the phone and stood there in a panic. I didn’t know what to do.
Many people would be participating in and attending the musical event, but my family needed me. My call as a husband and provider shouted much louder than the duties I carried in my working world. I decided to wait until I heard from Cazandra to determine my next steps.
After some time passed, I called my wife, and she informed me that the medical team had decided to screen Caeleb for an inhibitor — a complication that causes the immune system to produce antibodies to factor replacement therapy. She told me that she could handle the issues in Houston until I finished the concert in Deming, urging me not to cancel my plans. Instead, we could discuss our next steps when I completed my responsibilities.
With some misgivings, I agreed to go ahead and conduct the concert.
As soon as I finished, I called my wife, and we agreed that my oldest son, Julian, and I would leave for Houston early the next morning. She told me that the medical team had used a bypassing agent to help my son’s blood clot. It seemed to work, as the bleeding episode had stopped. However, the team at the hemophilia treatment center wanted to keep Caeleb in the hospital to monitor his progress and implant a port-a-cath to provide prophylactic treatment. They had diagnosed him with a high-titer inhibitor.
Bypassing agents don’t work as fast as standard factor VIII products, so it was crucial that we have easy access to treatment. We couldn’t depend on intravenous infusions because my boy’s veins were small and unreliable. Accessing through a port-a-cath seemed to make the most sense for administering treatment to my son.
The following day, Julian and I made our way to Houston. I remember looking into my wife’s eyes as disbelief overwhelmed us. I hugged her and apologized for not being available when everything seemed to hit the fan. Cazandra assured me that we made the right decisions for our family. She handled the situation in the airport like a pro and was glad I’d fulfilled my obligations, as so many people were involved in the concert in Deming.
Later that evening, Cazandra and I shared a few moments and thanked each other. We concluded that we were a mighty team who accomplished incredible things. The chaos of the previous 48 hours subsided as gratitude for the power of family overwhelmed us in that Houston hospital room.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.