Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
These concerns may need urgent assessment, but they are not always emergencies.
Seek emergency help for severe trouble breathing, blue or gray lips, unresponsiveness, a first or prolonged seizure, repeated seizures without recovery, serious choking, or signs of severe dehydration.
Families of a person with known seizures or adrenal hormone deficiency should follow the emergency plan provided by their medical team.
Families should contact the clinical team promptly for new feeding difficulty, repeated coughing with meals, unexplained weight loss, a clear increase in seizures, unusual thirst or urination, repeated vomiting, worsening sleepiness, or loss of previously gained skills.
Routine follow-up should be individualized.
It may include monitoring growth, nutrition, hydration, development, movement, seizures, vision, hearing, sleep, dental health, and hormone function.
Medication and feeding plans should be reviewed as the child grows.
The article also says
Genetic counseling can be revisited over time.
Updated testing may become useful as genetic knowledge and laboratory methods improve.
Counseling may also help relatives understand whether testing or pregnancy-related consultation is appropriate.
Every sign above is quoted from the sofidex article on Arhinencephaly. If you are not sure, err upward — it is always reasonable to be checked.