Welcome back to the Share Your Story series. Last time Simona from Concepts by S shared her story on Mental Health and how it can run in your family. This week we have Beth from New Age Dream who is sharing her story on her beautiful angel, Miss Cassie.
New Age Dream
Bethany is a 30-something, married mother of two. She loves cooking, writing, sewing, DIY and reading. When she’s not working you can find her chasing her kids around, cleaning up endless messes, and trying to practise daily meditations. In January 2013 she and her husband heard the words that would change their lives and in June 2013 they got to meet and say goodbye to their now (middle) child. A beautiful daughter who gained her wings after 3 hours before being taken by a condition called Anencephaly. From then on she has been working on spreading folic acid awareness and spreading awareness of the condition itself.
One in four women have lost a baby.
Either through miscarriage, chemical pregnancy, stillbirth or infant loss after birth. The statistic is supposed to be one other woman and I’m supposed to be in the 3 who haven’t, isn’t that right? Aren’t these statistics supposed to just be numbers? Well, I feel like I am proof that anything can happen to anyone; it happened to me five years ago.
We had a 15 month old.
She was home out of the NICU and off the monitors, not on oxygen anymore and she was steadily gaining strength so I figured it was the best time to try again. We wanted two and I wanted them to be 2 years apart. It took us 2 attempts (2 months) to conceive her just from me researching the “signs of ovulation” and watching my body for the signs.
The pregnancy wasn’t as rough this time around as it was for the oldest. I still had killer morning sickness all day, every day but the rest of the sick feelings weren’t as bad. We went in on January 17, 2013 to find out the gender, it was supposed to be an early birthday gift to me (my birthday was the next day).
Instead we were told to wait a minute.
The woman started to look concerned when she was looking. I kept asking about the gender, I was sure this was going to be a little boy. She excused herself and found a specialist doctor who came in and looked immediately. He then turned and dropped the biggest bomb on us, tore my life to pieces.
He asked us if we had heard of Anencephaly; a severe Neural tube condition where the tube fails to close in early pregnancy. If it doesn’t close at the base, it forms a hole in the spine called “Spina Bifida” but if it fails to close at the top (like hers did), it leads to Anencephaly. This technically means “lack of brain.”
The skull fails to fully close and over the pregnancy the amniotic fluid erodes the brain until the stem is all that’s left. The stem gives the basic life reflexes but babies with this condition are normally miscarried. They think it’s about a 1 in 1000 chance that ends in miscarriage, it goes up to 1 in 10,000 chance of making it through delivery and being born alive.
What Causes Anencephaly?
Anencephaly is a condition where the neural tube doesn’t close. It is thought to be possibly linked to folic acid, which I didn’t know a lot about before I had her. After losing her, I found out I had the MTHFR A1298C Homo. mutation. The MTHFR is a common mutation, it comes in two forms- A1298C and C677T.
The two forms can come in Homozygous mutations (both MTHFR genes are mutated, same defect), Hetero (only one mutation, you can pass it down but it has no real affect and this is most common) and compound Hetero which means one mutation of each- this is the most serious.
The MTHFR controls how your body digests the folic acid and folate you eat and consume. With a homo mutation, you can only process about 7% and need much higher doses of folate (but I did find that folic acid in large doses helped; I have a healthy three-year-old now). Outside of the MTHFR and folic acid, there isn’t much known.
People with close relatives who lost to Anencephaly have a slightly higher likelihood of losing one and children are at highest risk but the majority of cases end up being just completely random defect with no real cause.
Thank you Beth for sharing your story about Miss Cassie and raising awareness for Anencephaly. Something I haven’t heard of before. I’m honoured to have been able to share your story.
If you would like to support Beth then head over to her socials;