When Gwen Dillon’s son, Aaron, was just 1.5 years old, he was diagnosed with craniosynostosis, a birth defect in which the bones of a baby’s skull close early. According to the Kildare Nationalist, Gwen was heavily supported by Cranio Ribbons Ireland. Now, she is looking to give back. Throughout May, Gwen made and sold heavenly chocolate bombs, with all proceeds being given to Cranio Ribbons Ireland. Interested in donating or learning more about the cause? Click here.
Cranio Ribbons Ireland
When Aaron was first diagnosed with craniosynostosis, Gwen and her family had never heard of the condition before. So she spent a great deal of time searching online for support. While she trusts and believes in doctors and the hospital, she felt like connecting with other parents would give her a more realistic and detailed understanding of what her son was going through.
While searching online, Gwen came across Cranio Ribbons Ireland. According to the Cranio Ribbons Ireland Facebook page:
We are a parent run page aimed at craniosynostosis awareness, acceptance and support. This page is to help spread awareness about a condition known as Craniosynostosis, a condition where one or more of the sutures in the skull are prematurely fused.
Cranio Ribbons Ireland is not a registered charity. However, the cause works to support families through a craniosynostosis diagnosis. In addition to the Facebook page, the group also runs a private group on Facebook for those whose child has been diagnosed. Finally, Cranio Ribbons Ireland creates special care packages for children undergoing surgery. Typically, surgery is the recommended treatment. When children come out of surgery, they are greeted with a care package including toothpaste and a toothbrush, shampoo and other toiletries, toys, pajamas, slippers and socks, Vaseline, books and puzzles, a travel mug, and a personalized teddy bear.
So far, Gwen’s fundraiser has raised €375 ($455) for Cranio Ribbons Ireland. Gwen hopes to continue fundraising in the future, including for Craniosynostosis Awareness Month. In the meantime, she is continuing to support Aaron as best she can. In fact, earlier this year, Aaron even received his skull reshaping surgery.
Craniosynostosis
Altogether, craniosynostosis is a birth defect in which one (or more) sutures, or fibrous joints between skull bones, close prematurely. Although the skull is not completely formed, the brain still continues to grow. In addition to causing the skull to look misshapen, craniosynostosis also restricts head growth and causes pressure to build up as the brain presses against the skull. Doctors are not sure exactly what causes craniosynostosis. However, some hypothesize that underlying genetic causes or genetic disorders may cause this defect. An estimated 1 in every 2,500 births has craniosynostosis.
There is also not just one singular form of craniosynostosis, but multiple forms. For example, sagittal craniosynostosis is the most common form. The sagittal suture runs from the front to the back at the top of the skull. When this closes prematurely, it causes the head to grow long and narrow. Next, coronal craniosynostosis affects the coronal sutures, which run from each ear to the top of the skull. This causes the nose and eye socket to elevate on whichever side is affected, as well asa flattened forehead. In the metopic form, the condition is caused by the premature closing of the metopic suture, which runs from the bridge of the nose to the “soft spot.” This widens the back of the head and causes a triangular appearance. Finally, the lamboid form affects the lamboid suture at the back of the head; this is typically the rarest form.
Want to learn more about the different types of craniosynostosis? Nationwide Children’s Hospital offers a great overview.
Symptoms
While an abnormally shaped head is the most common symptom of craniosynostosis, there are other signs and characteristics. These include:
- Slow or no head growth
- A raised, hard ridge along affected suture
- An abnormal or disappearing fontanel
- Note: Alternately, the fontanel (“soft spot”) could be bulging or “full.”
- Intracranial pressure
- Developmental delays
- Headache
- Irritability
- Poor feeding
- Nausea and vomiting
- Difficulty moving eyes upward
- Lethargy
- Noticeable scalp veins
Learn more about craniosynostosis.
