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    Community Voices

    Information Thursday: Spina Bifida Neural Tube defects- encephalocele

    Every week, I’ll post Information on a thurday about Spina Bifida and Hydrocephalus.

    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.

    The type of Neural tube defects include Spina Bifida, Anencephaly, and encephalocele #SpinaBifida #neuraltubedefect #Encephalocele

    Community Voices


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    Community Voices

    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

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    Community Voices

    My Makers Cruel Joke

    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. ✌????

    Mom Creates Purple Butterfly Stickers to Indicate Child Loss

    Millie Smith wants to make hospital nurseries more sensitive to the needs of grieving parents. When Smith, from the U.K., was 12 weeks pregnant, she learned one of her twin daughters, Skye, was not going to make it due to a condition called anencephaly, which has a zero percent survival rate. According to Smith’s Just Giving page, when she was 30 weeks pregnant she went into labor – giving birth to daughters Skye and Callie. Callie was placed intensive care, while the Smiths spent three hours with Skye before she passed away. “When Skye passed, it felt like my world had ended, even though I had Callie, my heart was broken,” Smith said. While visiting Callie in the hospital nursery, a parent of twins turned to Smith and said “You are so lucky you just have one,” Smith told Babble in an interview. “They weren’t to know that I did at one point have two… I didn’t have the heart to tell them what had happened.” “I had had seven months to prepare for this and still the pain was unimaginable,” Smith said. “At this moment I decided I needed to help families in a similar position.” So Smith came up with a way to help families grieving the loss of a child in a multiples pregnancy – a sticker. The sticker, a purple butterfly, is meant to be placed in the newborn’s bassinet to indicate the child is part of multiples pregnancy where the other sibling didn’t survive. Smith hopes by making visitors, other parents and medical staff aware of the situation – grieving parents will be spared the pain of having to repeat their story. Through her Just Giving page, Smith is fundraising to help bereaved families. Funds will go towards educating hospitals and providing more purple butterfly stickers as well as other services for families coping with child loss. “Ultimately I will never be able to stop this from happening, but the more support groups we can set up and put things in place like the stickers the better it will be,” Smith told Babble. “It’s the hardest thing anyone has to deal with.”

    Bethany Conkel

    Child Loss: The Gifts I'm Thankful for on Mother’s Day

    I wasn’t expecting to find myself in the card aisle at our local grocery store. I was just trying to kill a little time and ended up there by mistake. It’s not an area of the store I tend to frequent. Bethany and her son. As I walked through, Mother’s Day cards seemed to jump off the rack. I briefly glanced at a card with characters from Disney’s “101 Dalmatians” on it. A cute love note to mom was written in a clever ditty. In that moment, I couldn’t help but wonder what type of card my son would have given me this year. Would it have been handmade with brightly colored scribbles or store-bought with his favorite cartoon character printed on the card? Would he have given me a flower planted clumsily in a pot, or would he have helped to make breakfast in bed for me? It’s been three and a half years years since my son was born and passed all on the same day. Although it has been several years, I still wonder sometimes what he would have been like and what my life would look like with him in it. What would my Mother’s Day turn out to be like with a 3-and-a-half -year-old little boy running around? As I walked out of the aisle, I felt sad I will never get a card from my son. I will never get to cherish a special Mother’s Day gift from him. As I continued to work my way through the store, I realized something. Although I will never get a physical gift from my son, he has still given me a gift. Many gifts, in fact. The first gift my son gave me was the gift of motherhood. My sweet boy was my firstborn and made me a mother. Although the time I had to mother him in my arms was short, I still get to mother his memory daily. I will be forever thankful to him for making me a mother. My son also gave me the gift of empathy. Before saying hello and goodbye to my son, I never understood the loss of a baby. I had met a few bereaved mothers and honestly never understood why the pain lingered, even years later. Now I know. Now I understand. Now I’m able to connect with bereaved mothers, support them and empathize with their feelings. My son gave me the gift of knowledge. Before receiving a terminal diagnosis for my son, I never knew families even faced such things. I had never heard of anencephaly, trisomy 18 or 13, limb-body wall complex or Potter syndrome. I didn’t know things like perinatal hospice, bereavement doulas or neonatal organ donation even existed. Although learning about these things has been difficult, receiving the gift of knowledge about this world has changed my outlook on life and allowed me to help others in new ways. My son gave me the gift of friendship. I can’t even count the number of people I have met, connections I have made and friendships I have forged because of my son. Some friendships are so deep that I feel like I gained extended family members. I have met some truly incredible people, and my life has been enriched in so many ways because of them. Had it not been for my son, I may never have met these amazing individuals. My son has taught me life is both fragile and precious, and it should be embraced — a lesson I very much view as a gift. Although my son isn’t here to give me a special hand-crafted bobble to place on my desk or a beautifully colored picture to hang on my refrigerator, he continues to bless my heart and give to me in so many ways. His life has helped shape who I currently am as a person and continues to influence who I will become. This Mother’s Day, I’m thankful for the many gifts my son has given me. If you are a bereaved mother, I hope this Mother’s Day will be gentle for you. I encourage you to look for some special gifts that your little one has given you. I hope you’re able to find something amazing. A version of this post was originally appeared on All That Love Can Do. Follow this journey on Purposeful Gift. The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Bethany Conkel

    When I Rode on a Rose Parade Float to Honor My Son's Organ Donation

    I sat there in complete awe of the events unfolding around me. It was like I was in a dream. I had a smile on my face so wide that it actually hurt. My momma’s heart overflowed with pride. With one hand I waved vigorously to a sea of faces, with the other I held tightly to an eight-by-10-inch picture. On January 1, 2016, I had the amazing privilege and honor of ringing in the New Year by riding on the Donate Life float in the Rose Parade in Pasadena, California. Although it was a joy to ride, I did not ride for myself. I rode in honor of the person framed in that eight-by-10-inch photo. My son. My sweet, precious baby boy. After a brief 1-hour-and-20-minute dash of life, my son became a donor. Saying goodbye to your baby shortly after birth isn’t something most parents are faced with, but it was part of our reality. For us, making the choice to participate in donation made sense and brought healing. Despite my son’s small size and the fact that he did not qualify for transplant donation, he was still able to give his pancreas, liver, blood, skin samples and whole body to researchers. My husband and I were extremely proud. In the 3.25 years since his passing, we have learned that his gifts have made a huge impact. New equipment has been developed. New techniques have been documented. A new procedure has been passed through the Food and Drug Administration. Lives of other babies are literally being saved because of him and his gifts. Yes, my momma’s heart overflowed with pride that day as I sat on the float. Bethany riding the float with two other loved ones of donors During the incredible ride down Colorado Boulevard, I did my best to make eye contact with people in the crowd. Most people would smile and wave excitedly. Their eyes would then move from mine to the picture I carried in my hands. They would stare for a moment, realize it was a picture of a baby, and be touched by what that picture meant. It meant a baby had died and became a donor. Many of these strangers would send me a look of sympathy and say, “Awwww.” Others would turn to the person next to them and say, “Look, a baby!” Some mouthed “Thank you” to me, or placed one hand over their heart and waved to me with the other. Other people’s eyes filled with tears. Each time a person in the crowd was moved by seeing my son’s picture I wanted to jump off the float and tell them his story. I wanted to tell of his short yet wonderful life, and how his legacy lives on. I wanted to let them hear the momma’s pride in my voice… Instead I smiled as much as I could, hoping my face would convey all that I wanted to say. Now, as I sit at my computer, I struggle to express just what it meant for me to be able to ride on the float. Yes, it was a momentous, fun, once-in-a-lifetime event, but for me it was more than that. It meant my son was being recognized, remembered, celebrated and honored. More importantly, it was an opportunity — an incredible opportunity. By riding, I was able to be an advocate for donation, specifically neonatal donation. It allowed me to shine a light on donation for research, an option often overlooked. (In fact, my son is the first research-only donor to ever be represented on the Donate Life float.) It gave me the chance to represent all the other neonatal donors and their families who have given – specifically, the over 50 neonatal families who have given to research since my son’s donation in September 2012. It let me raise awareness for both infant loss and for my son’s condition, anencephaly. It let me show the world that even a brief life can have a lasting legacy. It allowed a seed to be planted in the hearts and minds of people watching — the realization that a baby can be a donor! Although I was not able to share my story with each person in the crowd that day, I believe just being there, holding his picture, had an impact. I will forever be grateful for the opportunity that I was given to represent so many things and to honor my sweet boy by riding on the Donate Life float. It was truly a “proud momma moment” for me, something that, as a loss mom, are few and far between. As I finish typing, I must confess that I still have a smile on my face so wide it actually hurts, and my momma’s heart continues to overflow with pride! To learn more about neonatal donation, please visit Purposeful Gift and the International Institute for the Advancement of Medicine. To learn about organ donation please, visit Donate Life America. A special “thank you” to the organizations who selected me to ride on the float and sponsored our trip: the Musculoskeletal Transplant Foundation and the International Institute for the Advancement of Medicine. Bethany holding a photo of her son in front of the Donate Life float

    Jaxon Strong: How Boy Born With a Partial Skull Proved Doctors Wrong

    When Jaxon Buell celebrated his first birthday on August 27, parents Brandon and Brittany Buell were quite emotional about the milestone event for their little boy. Jaxon was born without most of his skull due to a type of anencephaly, which is a neurological condition that affects approximately one in 4,859 babies born in the United States each year, according to the Centers for Disease Control and Prevention. The CDC notes that “almost all babies born with anencephaly will die shortly after birth,” and the Buells told The Daily Mail that doctors didn’t expect Jaxon to survive the pregnancy.   Posted by Jaxon Strong on Friday, July 3, 2015   After an ultrasound at 17 weeks, doctors informed the Buells that there was a neurological abnormality with their unborn child, though they weren't sure what exactly it was. The Buells were given the option to terminate the pregnancy at 23 weeks, but they opted not to.   Posted by Jaxon Strong on Thursday, January 22, 2015   Jaxon spent the first three weeks of his life in the neonatal intensive-care unit at Winnie Palmer Hospital in Orlando, Florida, but it wasn't until he was nearly a year old that doctors at the Children's Hospital in Boston, Massachusetts diagnosed him more specifically with microhydranencephaly, reports This diagnosis helped doctors find the best possible medications for Jaxon, who had been struggling to sleep through the night and having episodes that resembled seizures.   Posted by Jaxon Strong on Friday, July 3, 2015   Shortly after the diagnosis, the family wrote on Jaxon's Facebook bio, “Jaxon has already shown how strong, smart, and special he is, accomplishing feats that doctors doubted he'd ever be able to do, shows improvements each and every day, and just reached a miraculous milestone in celebrating his 1st birthday. His perseverance and strength already shown is why we are calling his inspirational story, ‘Jaxon Strong.'”   Posted by Jaxon Strong on Saturday, August 8, 2015   Though Jaxon is stable, Brittney knows her young son's health could change overnight. “It is always in the back of my mind,” she tells The Daily Mail. “I'm very aware that today maybe his last day. I'm aware tomorrow he may not be here. I try to stay positive 99 per cent of the time but there is that 1 per cent because I know the reality of the situation – that we're probably going to outlive him.” Jaxon's Facebook page currently has over 131,000 likes, and his parents have also set up a GoFundMe page, which has over $72,000 in donations thus far.

    Bethany Conkel

    Anencephaly and Child Loss: One Mom's Experience

    His life was brief. Only 80 short minutes. There was nothing we could do to save him. No procedures could fix the missing parts of his skull or brain (a condition known as anencephaly). We could only love him, celebrate his existence, and embrace the time we had with him. We did everything we could to make the most of his life, but since we could not prevent his death, we wanted to embrace that as well. To do this, we chose to allow our son to give back by participating in organ, tissue and whole body donation. After our sweet boy passed, he was able to donate his liver, pancreas, umbilical cord blood, core blood from his heart, a skin sample and his whole body, all for various research studies. Due to his size and condition he did not qualify to donate for transplant, but we were more than happy to donate to research. Although it is not very common to learn how donations to research are used, we were blessed to receive feedback about all of his gifts. This brought us comfort, healing, and joy to our hearts. His liver helped researchers who are trying to find a cure for cirrhosis and various liver diseases. His pancreas went to study type 1 diabetes, specifically hoping to treat children who have this condition. His cord blood went to researchers who are investigating the causes of anencephaly, the condition that took his life. His core blood and skin sample went to create cell lines to be preserved for future research studies. Each of his gifts went directly to save or improve the quality of life for others. His whole body went to train emergency medical professionals and to improve equipment used in pediatric emergency medicine. He was gone for eight months on what we like to call his “internship” before we received his ashes back. One of his biggest accomplishments during his eight months away was to help the researchers get a new insertion site for a lifesaving procedure passed through the FDA. The researchers had tried to gain approval for this new location for seven years but had no success. After working with our son’s body, they resubmitted their proposed site and finally gained approval. In the letter from the FDA approval board the researcher was told that the reason they were granted approval was due to the images of the neonate donor. Our little boy was that donor! My heart always beats a little faster when I share that part of his story! This new procedure is already being utilized around the world and children’s lives are already being saved. Yes, I miss my son. Yes, I wish we had been able to spend more than 80 minutes with him. Yes, I wish anencephaly was not part of our reality. But, that is not how our story was written. Despite these things, I am proud of my son and the impact he has had on this world. My momma’s heart swells with pride when I think of the lives that will be saved because of his gifts. I am thrilled to think that my son helped researchers come one step closer to finding a cure for debilitating conditions. I am happy for the families that will not have to say goodbye to their little ones and experience that heartbreak because of the new procedure our son helped develop. I am so thankful to say my son was a donor. For us, participating in donation added an extra layer of meaning to our son’s brief life. My boy, Amalya Nathaniel (meaning “work of the Lord, given by God”), was indeed mighty! I couldn’t be more proud. My husband and I established a nonprofit, Purposeful Gift, to teach families about various types of donations and offer them resources and support. To learn more about neonatal organ, eye, tissue, and whole body donation, please visit our website. To see a documentary of our story, please visit Update from the author — After having our son in 2012, my husband and I have gone on to have two healthy children. We love parenting all our children — our son in heaven, and the sweet girls we have with us on earth.

    Baby Shane, After Completing His Bucket List in the Womb, Passes Away

    Even the briefest of lives can have an impact on the world. Baby Shane Michael Haley was born at 2:25 am on October 9th, according to the Prayers For Shane Facebook page. He died just a few hours later. Shane was born with a terminal birth defect called anencephaly, where the baby is born without parts of the brain and skull, according to The Center For Disease Control and Prevention. The Mighty previously covered the beautiful way his parents reacted to this sad news– they made their unborn child a baby “bucket list.” Parents Jenna and Dan Haley decided to spend Jenna’s pregnancy showing their unborn son the world. They visited the Empire State Building, the pier in Wildwood, New Jersey, the Statue of Liberty, a Zac Brown Band concert and more, ABC reported. Then, at 6:15 in the morning on October 9th, Shane passed away in his mother’s arms. “Shane spent his entire life in the arms of people that loved him unconditionally,” read a post on the Prayers For Shane Facebook page. “And I don’t think you could ask for a more beautiful life then that.” Be mighty. Like us on Facebook.