Flashback: Seventeen Years ago Their Baby Survived a Life-threatening Hemophilia Episode

Their son, Caeleb, was only eleven months old when he developed a severe bleeding episode. The family had just moved from Houston to New Mexico and they had not yet made emergency arrangements, if and when needed, with their medical team in New Mexico.

Cazandra, Caeleb’s mother, was to perform in a Christmas concert at their former church in Houston before she left for New Mexico. She took Caeleb with her to be circumcised by the hemophilia team that had treated him in the past.

Cazandra, told Hemophilia News Today that her husband, Joe MacDonald, arrived in their new home in Deming, New Mexico shortly before Deming’s local Christmas concert to be held at the town’s new church. Joe was the music director.

As Cazandra and Caeleb were preparing to fly to Deming she called her husband. The evening, under his direction, would feature specialty groups, and adult and children’s choirs. They wished each other a safe trip then he turned his phone off.

Immediately upon his arrival, two choir members rushed up to him and told him that his wife had been trying to reach him. The message she gave was that there had been a problem that prevented her from boarding the plane.

He called and immediately realized she was terrified as she explained that the medical team who circumcised Caleb had also injected him with a dose of FVIII before the circumcision. The medication helps form a clot and reduces bleeds. Yet when she had changed Caeleb prior to the flight his diaper was full of blood in much more volume than could have occurred as a result of the circumcision. Cazandra said she would take a taxi to the hospital.

At that moment, even though so many people were participating and expected to attend the musical, his duties as a husband and father were overriding his obligations to the concertgoers and the performers.

He decided to make a final decision on whether to announce the emergency and leave the concert after speaking to Cazandra and the doctors at the hospital.

When he was able to reach his wife at the hospital, she explained that the doctors decided to test Caeleb for inhibitors which, if present, can interfere with Caleb’s treatment. Cazandra assured her husband that everything was under control and that he should continue with the concert.

They spoke again after the concert. They agreed that he and Julian, their oldest son, should fly to Houston the following day. Cazandra said that by using a bypassing agent the doctors were able to remediate Caeleb’s blood clot. The next step while he was still at the hospital was to have a port-a-cath implanted as prophylactic treatment.

The port-a-cath seemed to be the best option for treatment because Caleb’s veins are too small and unreliable for intravenous infusions.

Bypassing agents treat bleeding events in people such as Caeleb who are diagnosed as having high-titer inhibitors. They bypass the factors that the inhibitor blocks and the body is then capable of forming a normal clot.

Julian and Joe arrived at the hospital the following day. The parents hugged each other still in disbelief over the very close call that almost took Caeleb’s life. They were overwhelmed. Cazandra reassured her husband that the decision they made was in everyone’s best interest.

He was so proud of Cazandra and the way she managed to think clearly and make the right decisions. He admitted that he felt very sorry not to have been there for her. And yet he was grateful that he could fulfill his obligations to the people who attended the concert as well as the performers.

That evening they sat in Caeleb’s hospital room thinking of the events that occurred in the last forty-eight hours. The chaos had subsided. The couple was filled with gratitude that Caeleb’s life was saved. At that moment they decided they were a pretty good team.

 

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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