Anencephaly is a condition characterized by incomplete formation of the brain and bones of the skull. It is categorized as part of a group of birth defects called neural tube defects (NTD) because during the first few weeks of embryonic development, a structure called the neural tube does not close as it is supposed to. Because this tube does not close, the developing brain and spinal cord become exposed to amniotic fluid that ordinarily only surrounds the fetus in the womb. Because of this exposure, developing nervous system tissue breaks down, including large portions of the brain. Most babies with anencephaly die before birth or within a few hours after birth. The causes of anencephaly are not fully understood but may involve many genes interacting with environmental agents or may be the result of chromosomal disorder. Organizations that supply resources and grief support are available for families that have lost a child. Information provided in part by our partner NORD.
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This week, I’ll share what Spina Bifida-Neural Tube defect means and what the disabilities or symptoms are.
Closed Neural Tube defects are a diverse group of defects in which the spine may have malformations of fat, bone, or the membranes (Called the meninges) that cover the Spinal cord. Many of the neural tube require surgery in childhood. People with this type of Spina Bifida may have weakness of the legs and trouble with bowel and bladder control.
Neural Tube defects are severe birth defects of the brain and spine. The CDC urges all women of reproductive age to get 400 micrograms (Mcg) of folic acid every day, in addition to consuming food with folate from a varied diet, to help prevent neural Tube defects (NTDS).
I have Spina Bifida which is an encephalocele is a sac- like protrusion or projection of the brain and the membranes that cover it through an opening in the skull. Encephalocele happens when the neural tube does not close completely during pregnancy.
Most people do not realize that my type is Spina Bifida but it is.
I’ve always struggled with anxiety and was diagnosed with PTSD when I was 20, as a result of childhood abuse. But truthfully, I was facing everything and doing pretty well considering. But in 2020 (age 25) I lost my daughter. When I was 20 weeks pregnant with her she was given a diagnosis that would not be compatible with life. We tried to make the most of our time with her though. She was loved so so much and I was always very in tune with her/my pregnancy. Despite trying to make the most of our situation with trips, a baby bucket list and talking to her with belly buds, she died when I was 26 weeks pregnant and I had to deliver her stillborn after a very traumatic four days in the hospital. I held her for 12 beautiful hours. Then I had to leave the hospital without my baby and plan her funeral. I’ve been a complete mess ever since. She was (and still is) so loved. It has been such a challenge to even do simple tasks. Everything feels too big to handle. I break down daily. It’s debilitating. My arms physically ache to hold her again. Four months after we lost her I got pregnant again. I was surprised but happy. Once again, I was very in tune with my pregnancy. However I miscarried at 7 weeks. Miscarriages are so common and the condition my first daughter had wasn’t genetic so neither instance was anything I did or that could have been prevented according to my doctor - just absolute crap luck! But it’s hard to not feel like it was me. Like if I was healthier, happier, better, etc. I wouldn’t have lost my second baby. If you’re still reading this, I appreciate you. Sometimes it’s nice to just get my feelings out there. I do have an extremely supportive husband and family but no one close to me actually knows how this feels. My husband was devastated, but he didn’t have the same experience at all. I consider it a blessing that I was so in touch with my pregnancies and would never trade my babies existence in order to relieve my pain but damn. It’s hard. Sometimes I wonder how much a person can actually handle. Because I’m at my breaking point. #ChildLoss#PregnancyLoss#Grief#PTSD#ChildhoodAbuse#Anencephaly#Stillbirth
How can I cope with my ex and his new girlfriend having a baby girl?
My ex and I haven't been together for quite a while now but when we were together we had 2 beautiful boys and one angel baby girl (stillborn, anencephaly.) While we were together he would always reassure me that we would have a baby girl. Now he is having a baby girl with someone else and now I can't seem to get rid of the anxiety, depression and I haven't been sleeping too good. Also the urge to self-harm has been increasing steadily. What do I do? How do I get rid of the constant pain? The fact that he has been lying hasn't helped. #CheckInWithMe#depressed#Low#mentalpain#confused#New @H
Sometimes I wonder what I did in a past life do have to deal with what I deal with now on the daily. I have hypothyroidism. But a rare type. You must be thinking: “J, what possibly make yours so rare?” Well you see I was born with Congenital hypothyroidism. When the great creator was putting all my ingredients in the bowl to make this sweet cupcake he forgot a pretty important part. See I was born with out a thyroid, I have never had one. All my childhood I never understood why that was such a big deal and how important a thyroid is. I also was struggled with my weight and as a child who was always bigger I never understood why I was always a little chunkier that other girls my age or why I started wearing junior clothes when I still wanted to shop at Limited Too and RaveGirl. I remember when I was about 8 or 9, my parents what’re to try and give me more responsibility and let me handle taking my Synthroid on my own in the morning. Until they realized I didn’t take it for 2 weeks. I didn’t understand how important it was until MUCH later in life.
But I am going to back track I minute to tell you a few things about my mother and her pregnancy with me. See twins run in my moms family. My Gandma was a twin and her grandma was a twin. And if I have a daughter…. Well, you get the picture it skips a generation. But my mothers pregnancy was pretty stressful. My parents found out that my sister had what is called #Anencephaly. It’s a disorder where the brain spinal cords and back of the skull never fully develop and the child doesn’t live long after birth. D lived for 47 minutes. We where also born 2 1/2 months early. And I spent a while in the NICU.
Shortly after I was born they did testing and realized my thyroid was nonexistent, no not nonfunctional, nonexistent. Doctors said it could be possible that my sister had two but since no autopsy was performed we will never know for sure. So from then on my parents had to drive me 2 hours south to UCLA to see a specialist. Up until I got older and I didn’t have to see a pediatric endocrinologist that they had me start seeing a general endocrinologist in my home town. I must also add that Bakersfield, CA has only had about 2 or 3 in my 25 years of life.
I must also add that as a child my dad worked in the oil industry (I mean it is Bakersfield) and at one point he moved us to Corpus Christi, TX. While we lived there an I would go see my specialists it was discovered that I have BVAD Bicuspid Aortic Valve Disease. I know you must be wondering what could that possibly be? In simplest terms two of the leaflets in my aortic valve are fused together and instead of having three leaflets… I have two. Bring on the cardiologist let’s just add another socialist to my medical history. So back to the earlier stated question: Who did I piss off in a former life?
Being a twenty five year old young woman in this day and age is hard. You are judged by your looks and nine times out of ten it’s not pretty. It even hurts more when you deal with a silent disease like hypothyroidism. See I have always just accepted the fact that I will always be bigger. Would I love to confidently walk around in a Bikini on the beach? Hell yes! But my reality is a tankini and board shorts. I know what people who don’t understand this disease thinks: “Oh she is just fat.” “She is just lazy.” Okay judgmental pricks NEWSFLASH:
You’re just lucky because I have the ablility to be the trifecta: Looks, Personality, AND Smarts. And hey if you keep pissing me off I can still make it happen. Don’t test me. “But why don’t you J, I mean you say you can but will you really?”
I have had times where I am on a roll and I got my head in the game. And then life got in the way: break ups, new job, full time student, family issues etc. and I am an emotional eater. This cupcake eats cupcakes when she is feeling blue. Y’all I can look at a bag of Cheetos and gain ten pounds just by breathing in the aroma. We all know everything that comes with hypothyroidism: the anxiety, #Depression, tiredness. I feel like a PMSing Grizzly Bear that was woken up too early from hibernation. ALL.THE.TIME.
But here is what I have realized. That I want to share with others: My life, is just that, mine. I wouldn’t change anything about it. I have some scars from my past but those scars just prove that I showed up to the battle. We are living in a judgmental world that is bringing us down. This vain society that only cares about the vanity of a person and not the personality of them that is real, true, and honest. We have forgotten the old saying of “don’t judge the book by the cover” but instead we have casted the tattered cover, bent at the spine, novel that is a human being. Silent chronic illnesses that some have to battle on the the daily. I will sacrifice my morning routine just for 20 more minutes of sleep. I often opt out of a Friday Night out just so I can fall asleep watching a Golden Girls marathon by 8pm.
But in all this I have found my voice. I don’t allow people to look ok down on me and my Chronic Illnesses. For the longest time I wouldn’t even accept as a “Silent #ChronicIllness” I would say I’m not sick “I have my shit together” Guys I don’t have my shit together. I use sick days not for when I’m sick but for when I just want to sleep all day. I sometimes cry for no reason and some of my joints crack like some of my patients I see in my Orthopedic Clinic. But this is my my declaration to you and to myself: I am going to wake up everyday and strive to be a better person than I was yesterday.
No matter what I do the decisions I make will take me where I want. So to all my Silent Illness fighters, Hypothyroid Siblings. I am standing next to you. And I am here to fight with you. We all need a cheer squad. I’ll be yours. ✌????