Since nine months old, he has needed doses of intravenous immunoglobulin to build his immune system —and constant monitoring to avoid anything that might trigger internal bleeding.
Then, what was supposed to be a one-day hospitalization for another “routine” dose turned into a nightmare.
That morning the baby appeared unusually lethargic. A CT scan revealed blood on the brain. He was rushed into surgery where doctors discovered a serious cerebral hemorrhage. He has been unconscious from that moment on, connected to about 6 tubes and breathing only with the help of a respirator.
The past year and half –this child’s entire life— the doses of immunoglobulin have been a holding tactic until an appropriate bone marrow donor could be found. Now that complex and delicate medical procedure must happen.
The procedure requires chemotherapy to destroy the baby’s original immune system, then the injection of new bone marrow to start up a new immune system.
Medical insurance has covered most of the doses of immunoglobulin until recently (the serum costs $ 2,400 each time). But the insurance approval to keep even this on track has been delayed and we are not certain of approvals going forward.
We have no certainty that the insurance company will cover the bone marrow transplant and procedures that must go with it to create a truly protective immune system for this little boy.
The baby’s father is a Special Education teacher, though he has missed work now since the latest crisis began. His mother is unable to pursue her career, as someone has had to guard the child 24/7 from anything that would trigger hemorrhaging.
I am a personal witness to the difficulties this young family is having and to their quietly heroic efforts to do everything that can be done to save their child. They are both givers rather than “takers,” people who do not find it easy to ask others for help.
But I feel that I cannot turn away from this, and I am reaching out to people who I know will feel the same.
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