Congratulations Jamari on your first birthday! Jamari has Trisomy 13, but defied the odds to reach a one year milestone. Here’s his story.
Contributed by Jon Harrison, Jamari’s dad
“Jamari is to be offered aggressive treatment. He is to be treated as a child without a “fatal condition”. Some babies with Full Trisomy 13 do survive. Please give Jamari the opportunity to be one of them! “Do not treat him as a baby who is going to die anyway”. He is our child, and we want as much time with him as possible. Please respect our decision and help us achieve these goals with our son.”
This statement was taken directly from Jamari’s birth plan. From the moment we received Jamari’s diagnosis during my wife’s pregnancy, the doctors repeatedly talked to us about palliative care and how they could make Jamari comfortable after birth. They stated how he was unlikely to survive longer than a week and that we should view the different options in hospice care. Don’t get me wrong, we were not against hearing options but we definitely did not want the decision made for us.
Additionally, at the time of writing Jamari’s birth plan, Jamari’s heart condition (Tetralogy of Fallot) was going to require immediate surgery at birth. It was difficult to find a doctor willing to do heart surgery on a child with Trisomy 13. Many of them cited ethical reasons for refusing. Others said the risks outweighed the benefits. In the end, we found a surgeon willing to do the surgery, and although the whole heart situation became moot as Jamari’s heart condition improved drastically before his actual birth, it made us realize the importance of portraying exactly what we wanted for his overall care.
In the face of overwhelming statistics that say 80 percent of babies with Trisomy 13 die in their first week and 90 percent within their first year, we proudly celebrated Jamari’s first birthday on April 6, 2011. Jamari may be behind the average kid in his development, but he has surpassed huge milestones in our eyes. I would like to give special thanks to the pediatric and specialty staff at Tripler Army Medical Center in Hawaii for their continued support of Jamari, his development, and our family.
Jamari is unable to hold himself upright because of his delayed development and requires special equipment for sitting and mobility. He needs extra support for his upper torso. We typically use his Rifton Blue Wave bath chair to provide that support, especially when we want him to be seated higher off the ground. Not only do we use the pediatric shower chair when giving him a bath (as designed), we also use the bath chair frequently when we eat as a family. The chair is high enough to allow Jamari to join us at the dinner table. My wife also thought it would be a great idea to use the bath chair for Jamari’s birthday celebration so he could sit at the table with his cake.
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