Dandy-Walker syndrome is a brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. Common features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres, which is important for the coordination of voluntary muscle movements), and cyst formation near the internal base of the skull. The syndrome has an extreme range of severity (Incesu & Khosla, 2003).
At my 21 week scan they downgraded this as the ventricles were there and of normal size and all of the water works of the brain seemed to be functioning just fine. Ryleigh will have a variant of the syndrome.
Some people with a Dandy Walker variant live their entire lives without any symptoms. Others have it in association with other symptoms, resulting in severe disabilities or even death (Incesu & Khosla, 2003).
However, even with the DWS downgraded they found her heart defect. In all of this, we were presented with many choices but two main ones rang out:
Life or Termination
We did consider both as I believe many parents do -- who want the best quality of life for their baby. It took me a week to get over the guilty I felt for even thinking that abortion was a viable choice when the option was provided, especially when I feel her move and then I see her on u/s yawning and waving. I discussed with my husband how guilty I felt and we cried about it and wondered, are we alone? Do others think about this too?
We chose LIFE for Ryleigh. Knowing that no matter what we are the ones that will love her unconditionally and when they downgraded her DWS to a variant, we were even further confirmed we made the right choice.
Then we met the Hodge family! This family has two beautiful girls, one who is 19 and a singer living with a CHD herself (Sairah) and the other who is a 6th grader who has wisdom years beyond her age (Sierra). While we have met many families along this journey (thus far) who have given us great support, this family has helped us come to peace with our decision. One of the thoughts I had was, “will my daughter hate me or blame me for choosing her life to be as it may be?”
This family has given us the peace we needed to know that she WILL love us for choosing life, and despite her Truncus Arteriosus CHD, she will thrive and grow into an amazing woman. Both of the young women in this family are just that, amazing. I wanted to share a piece of writing that Sierra wrote about her sister and the choice of life, she entered into a TROPICANA writing competition – and she was a winning placement.
I think her piece will also help other parents who are faced with the options of finding out this news and being presented with two “life-changing” choices.
Choose Life, My Mom Did
By Sierra Hodge
I am just 12 years old and I am learning about abortion. I really did not know too much about it until recently. I over heard my mom and sister talking about it and they were upset about it. I started asking questions and they explained things to me.My mom told me that there was a lady who was pregnant and that the doctor told her the baby has a bad heart. She said that of course lots of times when people find out that there is a problem with their baby, the doctor says one option is to abort it. Well I am not sure why a doctor would tell people to do that, but I guess they offer that as a choice. I do not think that's a good choice. Well after reaching out for help from people in the area, she decided at 20 weeks that she was going to have an abortion because the baby was going to have a bad heart. My mom said since she was so far along she had to go to another State because she was 20 weeks pregnant that she was too pregnant so she needed to go to a hospital that could abort a baby so far along into her pregnancy. I thought that was so sad. How can a mommy do that, just because the baby was not perfect. I wondered to myself, am I perfect? Are you perfect? Is anyone perfect? No, so why did she do this?
This is the part I really do not understand. My sister Sairah is 19 years old. She was born with a bad heart. She was not perfect. She has a few medical problems. She has had 6 heart surgeries and 3 spine surgeries. I asked my mom why did she not have an abortion with my sister. She told me that she wanted a baby and that she was willing too take whatever God gave her, even if she was not perfect. She said that a baby was a gift from God no matter what. My mom said that my sister and I are a blessing. Our family knows so many
families that have children with bad hearts or other medical issues. She said that if all these moms had abortions that we would never know how special their children really were. We would never share the fun times, sad times and just getting to know them as a person. My sister has a bad heart, but she is in college and she is a singer. Children are a gift from God and if we get an abortion that we are taking away something that God wanted us to take care of and love.
I read about abortion and I was upset and confused about what I read. It's to be said that if you abort a baby early, then it's only an egg and it's no big deal. I am sorry, but I am not sure who you can say that it's just an egg. It's a person, it's a baby. I found this poem and I thought it was special and makes a good point.
“Dear family & friends,
I was so excited about what my life in this world would be. I thought about all the things I would like to do like playing with toys, riding a bike, going to the zoo, and having a dog. I wanted to see movies, go to school, make friends and go to the park and the circus. I wanted to celebrate Christmas and receive Jesus. I looked forward to listening to music, dancing, swimming in a pool, playing soccer, and having dolls.
I am very sad that I never got to do any of these things. My mother did not let me be born. I just don't understand one thing. Why didn't any of you help me? I wish you had. No one heard my crying voice.
From an unborn baby”In conclusion, choose life, my mom did and I am glad she did. It's because my mom chose to have my sister even though she was not perfect and had a bad heart, I am able to talk about my sister today and tell you how she is my hero and all the fun we have together. Thank you mommy.
Thank you Sierra from the very best parts of my heart for letting us know how this choice will impact our son who is 5 in the best possible way.With love,