Letter to the Arachnoid Cyst Lady

You may recall in one of my very early posts, I wrote about a website a lady who has an arachnoid cyst had set up. This is my letter to her.

Dear Arachnoid Cyst Lady (don’t know her real name),

I can’t imagine what living with an arachnoid cyst is like. I believe you when you say it is painful and you have had continuous headaches. I wouldn’t insult you by even pretending I could put myself in your shoes. I still, however, do not condone what you have written on your website.

My son has an arachnoid cyst. A large one for such a beautiful little head. We discovered he had it at his 20 week scan. We were asked our views on termination as we didn’t know at that point what quality of life he’d have. I spent hours upon hours searching the internet, looking for information on arachnoid cysts in babies. I couldn’t find a lot. I did, however, find your website. I also found the part were you wrote that if a parent discovers their unborn baby has an arachnoid cyst then it would be cruel of them to carry on with the pregnancy. You actually tell people to get rid of their child as keeping it would be meaner than not keeping it. After reading this, I’m ashamed to say that I considered what you were saying. As I had no other information, I thought what you were writing might be true. I showed it to my partner and we actually considered, based on this, that we maybe should think about it.

A few days later, in the hospital, I said to my partner that I couldn’t end the pregnancy. I didn’t care what the outcome was going to be, but I didn’t want us to choose to end the pregnancy – we would just deal with whatever happened. If he hated us when he was older for allowing him to be born, then so be it. At least we were giving him the chance to have his life.

I’m pleased to say that that was THE best decision we have ever made. Our baby boy is just perfect. He has had treatment for his cyst which has now shrunk significantly. He smiles, he chatters and he is just beautiful. He’s not in pain or, if he is, he doesn’t let it bother him. 

We have a beautiful son and my daughter has a beautiful brother.

So I’d just like to say that although I am sorry for what you are going through, please don’t tell people to get rid of their babies. My son is proof that not everyone who has this condition has the appalling life you write about. 

If anyone else sees that website and then reads this letter, please take heart from the fact that your baby could be just as happy as ours.

From a very happy mummy.

Ethans Escapades

5 thoughts on “Letter to the Arachnoid Cyst Lady

  1. I love you and your family soo much and I can not wait to hold him and see his beautiful smile. I believe you and your partner made a very brave decision and have a wonderful healthy baby to show to all the world that in spite of negativity and incomplete information, you carried this child to full term. God bless your entire family!

  2. inspiring bravery motivated by love from what is obviously a magnificent family . Wishing you all the joy that your children will bring you and every success with your fundraising efforts that will be a lasting legacy helping others faced with such challenges.

  3. I would never wish this decision on anyone and I’m so glad that you listened to your heart and not the Arachnoid Cyst Lady’s advice. Your little boy sounds like a fantastic fighter and he will make you very proud, just like he will be proud of you.

    Thank you for joining in with Small Steps Amazing Achievements :0)

  4. I am soooo glad you wrote to her. We too were faced a little over a year ago with finding out our baby girl had a very large Arachnoid Cyst on her brain at our 20 week ultrasound. Every appointment I went to they recommended that we terminate. I also googled it and found so many people who were having problems and I also read the Arachnoid Cyst Lady’s advice. We are also SOOOO glad we did not take our doctor’s advice or the Arachnoid Cyst Lady’s advice! Our daughter will turn 1 this week and she is doing wonderfully! She has met all of her milestones on time and is such a beautiful part of our family. I wish there was more out there for parents going through the same thing. I still think about that article and how scared it made me for my little girl. There needs to be more accurate things posted!

    1. I know. It is scary. It makes me feel ill when I think of what could have happened. It’s also so difficult to find support for this situation. There seems to be little information or research. I’m glad your baby girl is doing well x

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