AOSupport

Just curious to hear about other people's experiences with skull defects? At what point did you realize there was a problem? Is the skull defect directly under the scalp defect? Has anyone had a scalp defect directly over a soft spot? Has it closed okay? Has anyone had blood work done to check the thyroid?

Kyle has always had a huge soft spot right under some of his scarring on the top of his head. It closed a lot between 12-15 months but it hasn't changed in a long time. He is 20 months now so his doctor said it is still normal, but on average it is closed by 18 months. Apparently sometimes the thyroid is to blame for that. I am not exactly clear on this topic, but I would assume if it was a skull defect it would be related to the thyroid? Has anyone had blood work done for this?

He is still young, so I hope for the best that it will close on it's own but at what point do I push this topic a little more and what exactly should I do about it?

Thanks!

My son is younger than Kyle (he's almost 15 months now), so my answer might not be very useful... However, the skull defect was a very big one. At birth, it almost corresponded to the part of missing skin and was immediately detected. The defect extended to the area where you usually have a soft spot, but in our case it almost reached the back of his head. During the last months the defect was split in two parts thanks to a bony bridge (about 1cm) which joined the two parietal bones. It's a bit complicated to explain, I'd like to e-mail you pictures of it to make it clearer.

I don't know whether the thyroid is involved and no blood work has been done so far. The neurosurgeon told me it may take 3 yrs for a soft spot to close completely...

Sara

Isaiah's soft spot was big, misshaped and not symmetrical from birth.  The hole in his skull was also present from birth.  I don't remember his thyroid ever being tested.  He's 5 1/2 now, and the soft spot is closed, but his head is starting to become lopsided.  The plan is to address it this fall, unless it becomes worse rapidly. 

My daughter has a large mis shaped soft spot also. She is going in for skull xray, kidney and liver ultrasound and heart doctor on May27th.

Our son's defect closed completely (it took 2.5 years), but it also closed his sagittal suture - it sounds like Isaiah may have had some premature suture closure as well. According to our cranio-facial docs, when this happens, the brain growth can cause the skull to grow in odd ways. In Collin's case it was the suture that runs front to back along the ACC line. We were concerned we'd have to have surgery to repair a hole, now we may have to have one down the line to create a hole! If I don't laugh, I'll cry.

my daughters was noticable at birth, it measures 10cm x 10cm at least, and is over the soft spot, with a strip missing dowwn her forehead,to her nose.

were doing the same, closing the whole then opening it all up again, and agree if i dont laugh i'll cry,  what a 'headcase' my baby is... x