The Medically Complicated: Keanu

Our son, Keanu, has a very rare condition called heterotaxy. This condition effects multiple systems including his heart, thymus, spleen, and intestines. Heterotaxy causes Keanu to be severely immunocompromised.  Despite this, he does not qualify for a Medical Exemption (ME)* in NJ.

Keanu has congenital heart disease, had life-saving open heart surgery, and will need further heart surgeries. Keanu’s organ placement is abnormal causing an issue with his intestines called malrotation for which he may also need surgery.

Keanu is severally immunocompromised in that he has no thymus and polysplenia. The thymus is where T cells go to mature, hence he is deficient in mature T cells.  Polysplenia, or multiple spleens, results in no spleen function. The spleen is where B cells go to mature, hence he is deficient in mature B cells. Without mature T and B cells he cannot fight infections.  Keanu is so severely immunocompromised that doctors have ordered prophylactic antibiotics every day for the rest of his life.

The inserts of some vaccines, including the MMR, state they are contraindicated in those with “cellular immune deficiencies.” Clearly Keanu falls into this category but his very rare condition does not meet the NJDOH criteria to qualify for a ME**.

We exercise the Religious Exemption because vaccinations go against the very core of our religious beliefs. However, if the Religious Exemption is removed in the name of herd immunity our son’s only option to stay in public schools will be to be vaccinated, which could kill him.

*Keanu is seen by a number of specialist at Children’s Hospital of Philadelphia (CHOP). His doctors have recommend the full CDC schedule for Keanu.

** According to the NJDOH criteria Keanu might be exempt from 2 of the 12 mandatory vaccination in NJ if Keanu’s parent find a NJ doctor to write an exemption letter going against the recommendations of his specialist at CHOP.

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