Hello all.
My daughter is 24 weeks old. And has for months now had a raised fontanelle. She is under a hospital for another issue and a few days prior to her going in September 2019 I realised her fontanelle was bulging. . Not when she was laying or crying but all the time. My gp checked he told me shes well in her self its definitely CSF fluid (central spinal fluid) and let the experts check her at her hospital appt in London the next day.
I did this. She was then emergency seen my neurologist and had a emergency cranial ultrasound. Later that day they diagnosed her with BESS sometimes referred to as external hydrocephalus I was told its benign do not worry go home neurology would now see her 6 to 8 weeks. I'm still waiting for that appt and have been chasing it.
My concern is from looking back at all her pictures since July (2 to 3 weeks after her birth) all her photos you can see her fontanelle is raised and bulging and I cannot believe I didnt fully realise to September! I know she's well shes meeting her milestones feeding ok etc. But I really cant understand how a bulging fontanelle is normal and nothing to worry about its been now 4 months plus no sign of going down nothing. I'm so concerned because how will her head fuse together and close the soft spot it doesnt make sense. I've tried to research BESS or BEH that they have diagnosed but it's so hard to do so. And any groups I have found their children haven't had the bulge at all or if they have it was quickly resolved where as hers isn't changing at all.
Anyone had any dealings with anything I know if she was unwell things could or would be quite different.
Tia