Thanatophoric dysplasia

Treatment

What do I do once I learn my baby might have thanatophoric dysplasia?

It is extremely upsetting to learn that you baby may have thanatophoric dysplasia. Thanatophoric dysplasia is almost always lethal. Babies with thanatophoric dysplasia may die prior to birth, or shortly after birth, usually as a result of their severely underdeveloped lungs and problems brain and brainstem development.

If you have been told that your baby may have thanatophoric dysplasia, or you have had testing that confirms your baby's diagnosis of thanatophoric dysplasia, it is important for you to to seek emotional and social support. There are a number of support groups for women facing a diagnosis of a baby with a lethal condition, as well as support groups specific to experiences of families who have had a baby with thanatophoric dysplasia.

All babies who survive birth require a tracheostomy (a surgical incision that is made in the trachea or windpipe) and ventillatory support to continue to survive. Other treatments may include: antiepileptic drugs to control seizures, shunt placement for extra fluid around the brain (hydrocephalus), surgery for skull/neck bone issues (suboccipital decompression for relief of craniocervical junction constriction), and hearing aids. It is important to consider and discuss your desires for your child with the neonatal staff, both with respect to extreme life-supporting interventions and palliative (comfort) care.

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How is thanatophoric dysplasia treated?

How is thanatophoric dysplasia treated?

There is no cure for thanatophoric dysplasia. Treatments is based on the plan that the parents and neonatology staff have agreed upon with respect to extreme life-saving interventions and palliative (comfort) care measures. All babies who survive birth require a tracheostomy (a surgical incision that is made in the trachea or windpipe) and ventillatory support to continue to survive. Other treatments may include: antiepileptic drugs to control seizures, shunt placement for extra fluid around the brain (hydrocephalus), surgery for skull/neck bone issues (suboccipital decompression for relief of craniocervical junction constriction), and hearing aids. It is important to consider and discuss your desires for your child with the neonatal staff, both with respect to extreme life-supporting interventions and palliative (comfort) care. Thanatophoric dysplasia is nearly always lethal, although there are a few cases reported of long-term survivors.

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