Viena Storm & Craniosynostosis

This is Viena Storm

 

She has craniosynostosis, which is a birth defect in which the bones in a baby’s skull join together too early. This happens before the baby’s brain is fully formed. As the baby’s brain grows, the skull can become more misshapen. The spaces between a typical baby’s skull bones are filled with flexible material and called sutures. These sutures allow the skull to grow as the baby’s brain grows. Around two years of age, a child’s skull bones begin to join together because the sutures become bone. When this occurs, the suture is said to “close.” In a baby with craniosynostosis, one or more of the sutures closes too early. This can limit or slow the growth of the baby’s brain.

 

When a suture closes and the skull bones join together too soon, the baby’s head will stop growing in only that part of the skull. In the other parts of the skull where the sutures have not joined together, the baby’s head will continue to grow. When that happens, the skull will have an abnormal shape, although the brain inside the skull has grown to its usual size. Sometimes, though, more than one suture closes too early. In these instances, the brain might not have enough room to grow to its usual size. This can lead to a build-up of pressure inside the skull.

 

In Viena's case, she has both sagittal and metopic craniosynostosis, so her head can only grow upwards and long ways.

The sagittal suture runs along the top of the head, from the baby’s soft spot near the front of the head to the back of the head. When this suture closes too early, the baby’s head will grow long and narrow (scaphocephaly). It is the most common type of craniosynostosis.

The metopic suture runs from the baby’s nose to the sagittal suture at the top of the head. If this suture closes too early, the top of the baby’s head shape may look triangular, meaning narrow in the front and broad in the back (trigonocephaly). This is one of the rarest types of craniosynostosis.

 

Craniosynostosis affects 1 in around 2200 baby's, and is 4 times more likely to affect boys than girls, so as you can tell Viena is super special ✨

 

To "fix" this condition, she is going to be having surgery at Great Ormond Street Hospital on April 23rd and will then wear a helmet for the following 12-18months. For this to happen, we need to travel to and from London & Sevenoaks several times a month, quite often at peak times to make it on time to appointments, which as you can imagine, costs a fortune, and with 3 older kids too, a little help towards those costs will go a very long way so we couldn't be anymore thankful for any and all donations