Beyond Achondroplasia

Growing together with Clara

Time for decisions

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On the 1st December Clara was hospitalized. Although she seems to be very well, her neurosurgeon plan is that Clara stays at the hospital for a rest period of 10 days and to be close monitorized to evaluate the hematoma state after this forced rest. After this time, she will have another CT scan and if the hematoma shows increased size or remains the same, the neurosurgeon will proceed to surgery.

But if a hematoma is inside her skull and is compressing her brain and doesn´t show any sign to reabsorsion or consistency, all of this take me to say: surgery. At the same time, Clara is doing amazingly well.  Why should we operate her is she is doing great?

Because leaving inside her head an hematoma, that doesn´t shows signs of reabsortion in three months, might change position again producing more compression and with more osmolarity hability, can increase intracranial pressure with worst outcomes.

Hard to decide. Hard to operate Clara when, at this point, shows to be so well. All the risks of operating and all the risks of not operating.

Clara´s blood tests came out great. No problem with any of the coagulation factors.

In the last CT scan (27th November), the hematoma changed its form and position. It moved back from the frontal area and now is acumulating over the left parietal area. Intracranial hematomas also show evolution in their form, aspect and constitution. The presence of the hematoma can be compared to a brain tumor or a mass that produces compression and for that, neurologic signs.

Brain lobes

Image taken from “”

At this point, we could expect that Clara could show signs as:

  • headaches that tend to worsen in the morning
  • seizures
  • stumbling, dizziness, difficulty walking
  • speech problems (e.g., difficulty finding the right word)
  • vision problems, abnormal eye movements
  • weakness on one side of the body
  • increased intracranial pressure, which causes drowsiness, headaches, nausea and vomiting, sluggish responses.

And masses that compress the pariental lobe, may cause impaired speech, inability to write, lack of recognition, and spatial disorders.

And Clara is speaking more and more, with a structured speach and singing all day long “Happy birthday to you” among other songs.

This last days have been an incredible test to us all. How can we keep a two year old, full of energy, looked?! On a “prision like bed” or on a couch, in a room.

I´m still trying to figure that out…

clara Estef1

clara Estef2

clara Estef4

More 6 days to go in this slow pace.

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