Neural tube defect involving absence of much of the brain, skull and scalp
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Love the show? Have any thoughts? Click here to let us know!In the vast, windswept wilds of Wyoming, stories echo across time—some whispered in ancient legend, others carried in the cold silence of unsolved crimes. Long before these modern tragedies, the Indigenous Shoshone people spoke of the Nimerigar, a race of tiny, fierce warrior people said to dwell in the mountains and caves of the region. Lauren explores the possibility that ancient folklore and modern fear intersect in the same haunted landscape. But that's not the only mystery buried in the Basin. Kenzie dives into the chilling mystery of the Great Basin Murders, a string of unsolved homicides that have haunted law enforcement for decades. Women found along remote stretches of highway, their identities unknown, their lives forgotten—until now. We are doing something new and special for this case and covering it across multiple episodes because it spans multiple states! Join us as we explore what links—if any—exist between myth and mystery, and uncover the unsettling stories that make Wyoming's Great Basin a place where history never stays buried.--Follow us on Social Media and find out how to support A Scary State by clicking on our Link Tree: https://instabio.cc/4050223uxWQAl--Have a scary tale or listener story of your own? Send us an email to ascarystatepodcast@gmail.com! We can't wait to read it!--Thinking of starting a podcast? Thinking about using Buzzsprout for that? Well use our link to let Buzzsprout know we sent you and get a $20 Amazon gift card if you sign up for a paid plan!https://www.buzzsprout.com/?referrer_id=1722892--Works cited!https://docs.google.com/document/d/1Dq_0tJvFgEFuU1ZpZQ3E_LcuLc-RrTML8fSt9ILWb6k/edit?usp=sharing --Intro and outro music thanks to Kevin MacLeod. You can visit his site here: http://incompetech.com/. Which is where we found our music!
Bryce shares about the neonatal loss of his daughter, Hope, due to anencephaly. Bryce also talks about him and his wife having to make the decision between terminating or continuing the pregnancy. --- Support this podcast: https://podcasters.spotify.com/pod/show/findinghopeafterloss/support
In this episode of The Cordial Catholic, I'm joined by JuliaMarie Woolbright, an atheist convert to Catholicism to tell, first of all, her story of conversion to the Catholic faith, but then the story of her ongoing conversion through the experience of her daughter, Anastasia. Diagnosed in utero with Anencephaly – a fatal type of neural tubal defect where a baby is born without parts of their skull or brain – JuliaMarie shares deeply from her experience of Anastasia's life, from the time of diagnosis, to her eventual passing away, and the incredible experiences since in a story that's utterly captivating.JuliaMarie's honesty, charity, and faith is breathtaking and her insights into our ongoing conversions, as Catholics, into our faith lives, and into infant loss from a uniquely Catholic perspective is amazing. This is a conversation you won't regret listening to! To follow JuliaMarie you can find her on Instagram.Send your feedback to cordialcatholic@gmail.com. Sign up for our newsletter for my reflections on episodes, behind-the-scenes content, and exclusive contests.To watch this and other episodes please visit (and subscribe to!) our YouTube channel.Please consider financially supporting this show! For more information visit the Patreon page. All patrons receive access to exclusive content and if you can give $5/mo or more you'll also be entered into monthly draws for fantastic books hand-picked by me.If you'd like to give a one-time donation to The Cordial Catholic, you can visit the PayPal page.Thank you to those already supporting the show! This show is brought to you in a special way by our Patron Co-Producers. Thanks to Eli and Tom, Kelvin and Susan, Stephen, Victor and Susanne, Phil, Noah, Nicole, Michelle, Jordan, Jon, James, Gina, and Eyram.Support the Show.Find and follow The Cordial Catholic on social media:Instagram: @cordialcatholicTwitter: @cordialcatholicYouTube: /thecordialcatholicFacebook: The Cordial CatholicTikTok: @cordialcatholic
Samantha is a TFMR mom who lost her second daughter to anencephaly at 17 weeks pregnant. She came on today to share how this great loss has shifted her relationships and beliefs. Resources mentioned:1. ASCEND TFMR Grief Circle - If you are a bereaved TFMR parent looking for group grief support, I invite you to check out our upcoming grief circles starting in August 2024 https://www.theTFMRdoula.com/ascend-apply 2. The TFMR Support Circle, our free Facebook group for termination for medical reasons (TFMR) parents. Apply to join here: https://www.thetfmrdoula.com/facebookgroup And if you would like to share your TFMR Story on "Our TFMR Stories," email me here to find out more: sabrina at theTFMRdoula dot com Music clip:Pamgaea by Kevin MacLeodLink: https://incompetech.filmmusic.io/song/4193-pamgaeaLicense: https://creativecommons.org/licenses/by/4.0/
In this episode of Author to Author, Dr. Cynthia Toolin-Wilson interviews Jane Lebak on her book Carrying to Term: A Guide for Parents After a Devastating Prenatal Diagnosis.Every year, thousands of expecting parents start prenatal testing to find out if it's a boy or a girl…and instead learn the baby is going to die. Anencephaly. Trisomy 18. Potter's sequence. They're called “incompatible with life.” But they're not incompatible with love. Many doctors recommend immediate termination, but more parents are carrying their babies for as long as possible, often without guidance. Carrying to Term: A Guide for Parents after a Devastating Prenatal Diagnosis addresses every aspect of the longest (and shortest) months of your life. From emotional issues to spiritual struggles to funeral-dress shopping while you're still seven months pregnant, Carrying to Term offers strategies for parents struggling just to make it through the day. You can forge a best-case scenario out of a worst-case scenario. You can bond with a baby who hasn't yet been born. Parents have learned to make memories in brief windows of time, and you can too. Author Jane Lebak carried to term with Emily Rose, diagnosed with anencephaly at 22 weeks, and has been active in the infant loss community ever since. Based on her experiences and those of the CTT forum she moderated, the guide offers practical options for doing what parents do best: loving their babies. https://www.amazon.com/Carrying-Term-Devastating-Prenatal-Diagnosis-ebook/dp/B076L2M8K8Become a supporter of this podcast: https://www.spreaker.com/podcast/author-to-author--4129285/support.
Sharing a personal experience, especially a traumatic one, is a particularly popular scripted podcast form. Memoir done well often shoots to the top of the podcast charts or the bestseller list. It moves us, leaves us breathless, inspires standing ovations and prompts us into conversations and confessions of our own. Sometimes memoir creates change.But memoir produced without first grappling with why your experience matters to others can sound cheap, sensation-grabbing, and empty. As listeners, readers, and viewers, we are bombarded with confessions.There is a fine line between transformative and indulgent.Moreover, stories of heartbreak are hard to choose to listen to these days, because the world is showering us with trauma. Given the circumstances, why make memoir?The decision to make the private public isn't easy. Nor should it be.In the first episode of Sound Judgment, Season 4, I explore this question with producer Maribel Quezada Smith, who shares her extraordinary experience with life and death in The Pulso Podcast piece, “The Latino Experience of Fertility: A Story of Pregnancy Loss.”It took Maribel two years to write and produce this remarkable story about the birth of her son — and the death of her daughter. Her story succeeds, in part, because she identified something fresh: Miscarriage and other forms of pregnancy loss are particularly common in the Latino community, Pulso's audience. And so is the incredible societal pressure to bear children, setting up an impossible, often hidden, conflict.That her story succeeds in transforming, not indulging, is evident in the piles of grateful responses she received from listeners who shared her experience, but who had never heard their story reflected out loud. Shame and secrecy had dogged their lives. Maribel's story brought in the light. Along the way, Maribel had to answer several questions for herself about motivation, format, theme, mood, and point of view. Which private moments should she capture on tape? How much could she bear? To whom did she owe privacy? Which scenes and reflections would create momentum — and which pieces would she have to leave out?Maribel Quezada Smith is a bilingual video and podcast producer and the founder of Diferente Creative. Her video credits include producing TV shows for Discovery Networks, Netflix, TLC and A&E, and digital content for brands like AARP, NBC GolfNow and SquadCast FM. Her podcasting credits include Sacred Scandal (iHeart), Birdies Not BS and Pulso Podcast, to name a few. In 2021, Maribel co-founded BIPOC Podcast Creators, an organization devoted to amplifying the voices and stories of people of color.Maribel's passion is creating meaningful, standout content. Learn more about our voice coaching, show development, and production services for public media, higher ed, purpose-driven brands and nonprofits. Visit podcastallies.com or email us at allies@podcastallies.com. Subscribe to Sound Judgment, the Newsletter, our twice-monthly newsletter about creative choices in audio storytelling. Connect! Follow Elaine:Facebook | LinkedIn | InstagramLet's talk!✉️ Email me at allies@podcastallies.com
Still A Part of Us: A podcast about stillbirth and infant loss
David tells the birth story of his twin daughters, Hazel and Violet, who were born prematurely. Hazel was diagnosed with Anencephaly, but Violet was healthy. David recounts the weeks they had mourning the impending loss of their little Hazel, but they never thought that they would have to have to mourn the loss of both of their unborn daughters. DONATE $5 (aka "buy us a coffee/hot cocoa") to support the continued production of these stories. We appreciate all the help toward production and hosting costs. Or if you want to purchase an "Always a Part of Us" Legacy Gift for $20, you'll be providing to one of these families that shares their story, full transcriptions, mp3s, and mp4s of the recordings of their baby's birth story and advice episodes for their family history records. You will also get a shout-out on an upcoming episode. Thank you! Donate: https://ko-fi.com/stillapartofus SUBSCRIBE to our YouTube channel for more birth stories from families who have experienced a stillbirth or infant loss. We're grateful that you're part of our community! https://www.youtube.com/stillapartofus SUBSCRIBE to our podcast Still A Part of Us, wherever you find podcasts. Links (some of these links are affiliate links, which means we may get a small commission off your purchase, at no extra cost to you): Website: http://stillapartofus.com/ Grief Support Groups: https://nationalshare.org/ Dad Music: "She Dreams in Blue" by Josh Woodward. Free download: http://joshwoodward.com/ #stillbirthstory #stillborn #stillbornstory #birthstory #infantloss #infantdeath #babydeath #stillmychild #podcast #birthstories #babyloss #mybabydied #bereavedmother #bereavedfather #infantlossawareness #dadsgrievetoo #mamasgrief #pals #childloss #lifeafterloss #saytheirnames #babylossawareness #breakingthesilence #grievingmom #grievingdad #bereavedparents #pregnancyandinfantlossawarenessmonth
Still A Part of Us: A podcast about stillbirth and infant loss
David tells the birth story of his twin daughters, Hazel and Violet, who were born prematurely. Hazel was diagnosed with Anencephaly, but Violet was healthy. David recounts the weeks they had mourning the impending loss of their little Hazel, but they never thought that they would have to have to mourn the loss of both of their unborn daughters. DONATE $5 (aka "buy us a coffee/hot cocoa") to support the continued production of these stories. We appreciate all the help toward production and hosting costs. Or if you want to purchase an "Always a Part of Us" Legacy Gift for $20, you'll be providing to one of these families that shares their story, full transcriptions, mp3s, and mp4s of the recordings of their baby's birth story and advice episodes for their family history records. You will also get a shout-out on an upcoming episode. Thank you! Donate: https://ko-fi.com/stillapartofus SUBSCRIBE to our YouTube channel for more birth stories from families who have experienced a stillbirth or infant loss. We're grateful that you're part of our community! https://www.youtube.com/stillapartofus SUBSCRIBE to our podcast Still A Part of Us, wherever you find podcasts. Links (some of these links are affiliate links, which means we may get a small commission off your purchase, at no extra cost to you): Website: http://stillapartofus.com/ Grief Support Groups: https://nationalshare.org/ Dad Music: "She Dreams in Blue" by Josh Woodward. Free download: http://joshwoodward.com/ #stillbirthstory #stillborn #stillbornstory #birthstory #infantloss #infantdeath #babydeath #stillmychild #podcast #birthstories #babyloss #mybabydied #bereavedmother #bereavedfather #infantlossawareness #dadsgrievetoo #mamasgrief #pals #childloss #lifeafterloss #saytheirnames #babylossawareness #breakingthesilence #grievingmom #grievingdad #bereavedparents #pregnancyandinfantlossawarenessmonth
Still A Part of Us: A podcast about stillbirth and infant loss
Cat talks with Winter about her twin daughters Violet and Hazel, who were born prematurely. Hazel was diagnosed with Anencephaly, but Violet was health. Cat and her husband Dave were preparing for both a funeral for one of their children and a live birth of a little baby girl. DONATE $5 (aka "buy us a coffee/hot cocoa") to support the continued production of these stories. We appreciate all the help toward production and hosting costs. Or if you want to purchase an "Always a Part of Us" Legacy Gift for $20, you'll be providing to one of these families that shares their story, full transcriptions, mp3s, and mp4s of the recordings of their baby's birth story and advice episodes for their family history records. You will also get a shout-out on an upcoming episode. Thank you! Donate: https://ko-fi.com/stillapartofus SUBSCRIBE to our YouTube channel for more birth stories from families who have experienced a stillbirth or infant loss. We're grateful that you're part of our community! https://www.youtube.com/stillapartofus SUBSCRIBE to our podcast Still A Part of Us, wherever you find podcasts. Links (some of these links are affiliate links, which means we may get a small commission off your purchase, at no extra cost to you): Website: http://stillapartofus.com/ Grief Support Groups: https://nationalshare.org/ Mom Music: "Flickering Flame" by Josh Woodward. Free download: http://joshwoodward.com/ #stillbirthstory #stillborn #stillbornstory #birthstory #infantloss #infantdeath #babydeath #stillmychild #podcast #birthstories #babyloss #mybabydied #bereavedmother #bereavedfather #infantlossawareness #dadsgrievetoo #mamasgrief #pals #childloss #lifeafterloss #saytheirnames #babylossawareness #breakingthesilence #grievingmom #grievingdad #bereavedparents #pregnancyandinfantlossawarenessmonth
Zipporah lost her son shortly after his birth at 32 weeks due to anencephaly. She discusses learning about the diagnosis, the pregnancy, and the time after his birth and death. --- Support this podcast: https://podcasters.spotify.com/pod/show/findinghopeafterloss/support
Trigger Warning: Today's episode is about abortion. Katrina & her husband discovered in the 2nd trimester that their baby had anencephaly, a serious birth defect in which a baby develops without parts of the brain and skull. The pregnancy was life-threatening and they made the heartbreaking decision to terminate the pregnancy. Katrina accounts the last two years where she endured and grieved her pregnancy, a DNC and the passing of her father all during the pandemic. Roll It Out Registration Order your copy, ebook or audio book of UNDERSTANDING AERIAL SILKS on Amazon Get the FREE 3-Part Video Series Aerial REHAB Register for the FREE Mini Course HERE Reach me on Instagram @kerrywee1 kerry@wrapyourheadaroundsilks.com Greener Grass Podcast HERE Part of the Digitent Podcast Network See omnystudio.com/listener for privacy information.
Last year, Molli & Ben Crenshaw sat down with us to talk about finding true joy and meaning despite losing their infant daughter to a condition called Anencephaly. If you've ever wondered how to navigate the darkness of challenge and loss, you won't want to miss this episode! Our mission with Everstory is to seek out and celebrate everyone's story. No story is too big, no story is too small. Please feel free to reach out and share your story. We'd love to listen!Find us on Facebook or Instagram to learn more! Want to share your story? Send us an email to stories@doxology.church
In April of 2010, Janae and Rodney Hostetter received devastating news. At only 12 weeks pregnant, they learned their baby girl had a severe birth defect called Anencephaly. This birth defect made their daughter "incompatible with life." They were told she would likely die a few minutes after being born. Janae and Rodney knew this child was a gift from God, so they quickly declined the option of abortion. Even though they did not see their daughter — Aliyah Joy — healed on this side of Heaven, they did see God begin to write a powerful redemptive story over her short life. Ready to hear how God uses this story for His glory and Kingdom purposes on Earth? Let's go! JANAE HOSTETTER is passionate about seeing an end to abortion. She has the privilege of serving on the board for Align Life Ministries with her husband who shares this same passion. Align Life is a gospel-centered ministry that provides pregnancy services and resources to families across Lancaster and Lebanon Counties in Pennsylvania. Rodney and Janae live in Ephrata, Pennsylvania and Janae enjoys being a stay-at- home mom to their four children ages 10, 8, 6 and 4. Resources For You: Aliyah Joy House Building Project on FB Kam International & Comforters Life Choices Isaiah 60:1-2 Find a Pregnancy Center Align Life Pregnancy Center Next Steps: Share this podcast with a friend Check out our Blog Tell us how God is working in your life at our website Connect with us on Facebook and Instagram
Dr Priyanka Shelke - Lectures On Paediatrics ,Homoeopathy & Health
The common congenital anomalies in CNS. Anencephaly,Encephalocele, Congenital Hydrocephalus and Myelomeningocele. Kindly stay tuned
In episode 325 Caitlin @missmaysmoments shares the story of her two pregnancies. After navigating the challenges of PCOS, ovulation induction and IVF, Caitlin was lucky enough to get 17 embryos and fell pregnant on the first transfer. At her 13 week scan her baby boy - Teddy - was given a terminal diagnosis of anencephaly meaning he would only survive minutes outside the womb. Caitlin and her husband made the decision to have a termination for medical reasons (TFMR). Exactly one year later, after an anxious pregnancy, Caitlin welcomed her rainbow baby, Rudie in an emergency caesarean. Caitlin's story is one of patience, heartache and hope and she articulates all the emotions of infertility, pregnancy, loss and joy with clarity and wisdom.
This week, Aditi and Danyelle (www.pilsc.org) sit down with certified bereavement and fertility doula, Hadeer El Hindawi, to discuss her own journey through loss. In December 2019, at Hadeer's 20 week ultrasound, her son was given a terminal diagnosis, Anencephaly. She had to make the gut-wrenching decision of whether to continue or terminate the pregnancy the next day. She chose the latter and what followed were the worst hours of her life. Hadeer shares more about her experience and how she has navigated this difficult journey. You can contact Hadeer through: - website - instagram - twitter - facebook For immediate peer support across each stage of the journey text our national Pregnancy & Infant Loss Helpline at 1-888-910-1551 or chat on our website at www.pilsc.org
Pastor Robin and Erica Steel discuss their journey in learning what God sees as "whole" through their daughter Kennady's severe brain abnormality. Get the book, How to be Made Whole: https://howtobemadewhole.com/ Find Keri's story of pregnancy and infant loss in her book, Maranomi: The story of Paxton Cole and Carys Rainn https://linktr.ee/everydayroyalty
18 month ago, Rhiannon Green suffered an unimaginable loss. She talks openly and honestly about losing a baby, and her journey back to happiness.
Paul A. Byrne, M.D., is Dr. Mary Anne Urlakis’ guest on Episode 32 of Inter Vitam et Mortem: Between Life & Death. A pioneer in the field of neonatology, Dr. Byrne is the Founder and previous Director of the NICU at Cardinal Glennon Hospital for Children in St. Louis, Missouri. Dr. Byrne is currently a Clinical Professor of Pediatrics at the University of Toledo and the President of the Life Guardian Foundation. He is a former National President of the Catholic Medical Association (USA). In this episode, Dr. Byrne discusses not only the inception of neonatology as an academic clinical medical discipline but also the sensitive and controversial topic of brain death and organ harvesting. As an expert in the field, Dr. Byrne has published salient articles in peer-reviewed journals regarding the issue of brain death for forty years, he is frequently sought as a consultant and expert speaker and has been an invited presenter at the Pontifical Academy of Sciences in Vatican City. (September 23, 2019)
The Joyful Mourning - A Podcast for Women Who Have Experienced Pregnancy or Infant Loss
Listen in as I spend some time with Kathryn Ann Casey -- a mom to 4 children here and 3 in heaven, a woman who’s journey to motherhood and in motherhood has been full of heartache and loss and grief. And yet, after experiencing so much suffering she speaks with such tenderness and peace and reminds listeners of the joy that can be had even in the midst of suffering. Kathryn experienced 2 miscarriages, her son, Peter, has a rare and life-threatening genetic condition called SPINT2 and her daughter Celeste died during birth at 37 weeks from anencephaly. In our time together Kathryn shares wisdom specifically for women who have received a life-limiting diagnosis for their baby (she even explains why she prefers that term over terminal or fatal), she shares with her why she made the decision to carry her daughter to term but she also helps us understand the struggle she had with making that decision. She gives helpful wisdom to those who may love someone who is grieving and very tangible advice on how to walk older siblings through the death of a baby. And her answer to “is there anything you would do differently” may surprise you -- but it is honest and helpful and full of much wisdom. Listen for that around the 38-39 minute mark. This episode is full of practical wisdom, but more than that it is a reminder that joy can be had even amidst the worst of circumstances. That we can find the good, even in the pain. And most of all, I pray this episode reminds you that you are not alone in your grief and that you are more loved than you can ever imagine. YOU ARE NOT ALONE If you are feeling alone today and are looking for a safe place to share what you are going through, a place where you will be understood in this season of loss -- come join our free online community, The Joyful Mourning Community. A place where you will find women who have been through loss and understand. A place where you can share honestly about how you are doing and ask questions to women who can give practical wisdom because they have been there too. To join this free community, simply head to thejoyfulmourningcommunity.com -- all the details for how to join are right there. We would love to have you join us, we would love to remind you that you are not alone. -- EPISODE 048 SHOW NOTES: www.themorning.com/episode048 THE JOYFUL MOURNING COMMUNITY: www.thejoyfulmourningcommunity.com GIFT SHOP FOR GRIEVING MOTHERS: www.themorning.com/giftshop THE JOYFUL MORNING INSTAGRAM: www.instagram.com/thejoyfulmorning
Sebelum sikat gigi kali ini kita ngobrol bareng @diayuuu tentang pengalaman kita selama kehamilan yang pertama. Email: podcast.sebelumsikatgigi@gmail.com
-Our Mother's Day... Husbands were on the job. -Christine's daughter, Zoey was trying to talk herself out of her dentist visit -Baby Christian's terrible twos - Jazmyn's discusses her first pregnancy and her experience when she founded out her baby was diagnosed with Anencephaly. -What is Anencephaly? Prevention? -Christine's recounts her experience as she saw her sister, Jazmyn going through a difficult time -RHONJ-Danielle gets marry -RHONY- Sonja's hot mess house & life. Dorinda had a tipsy week -Southern Charm: Thomas is flirting with Kathryn. Naomie apologies to Peyton -RHOBH: Is Erika gone? Love Kyle -Vanderpump Rules: Poor Jax... Not -Leave Cardi B alone Azealia Banks! -Kardashians please stop using filters to introduce your children to the world. -Tristian Thompson blames cheating on being a NBA player.
Alie and Tyler have an extremely unique family. They have three children, all who have different disabilities. Jack has Asperger’s, Amelia was diagnosed with anencephaly and died two days after she was born, and Owen has albinism and is legally blind. Becoming Flexible Amelia Alie and Tyler received their first diagnosis when Alie was pregnant with their second child. Alie was 20 weeks pregnant and was told their baby had Anencephaly. Alie recalled, “They wanted to make sure that we knew at that appointment that our baby had no chance of survival. I remember the doctor look at us and saying, ‘Would you like to terminate the pregnancy?’ As he was saying that, I could feel her kicking inside of me and I thought, ‘No way, this is our child.’..That night we went home and became crazy google people and learned everything that we could about Anencephaly. It was hard; it was really really hard.” Anencephaly is when there is a neural tube brain defect which causes the brain not to form much above the brainstem. Choosing Organ Donation After Your Baby Dies Even though Alie and Tyler knew Amelia would die at birth or shortly afterwards, they made the brave decision to carry her to term and have her be an organ donor. Tyler said, “People though we were crazy and that maybe it would be a waste of time, but we kept trying, knowing that in one way in which Amelia’s life could have some purpose for everybody.” There are a several rules and guidelines set into place regarding Amelia’s organ donation. One of which was that Amelia needed to live an optimal number of hours after birth. Amelia surpassed that number and therefore only her heart valves were able to be used for donation. Alie said, “Throughout all of this, we knew we could help other babies, and we didn't get that it was heartbreaking. That was hard to deal with, being in the hospital with her and wishing she could die earlier so that we could help these other babies.” Amelia ended up being able to go home where she lived for another 12 hours. In total she lived for two-and-a-half days. Much longer than doctors anticipated. Giving herself a chance to truly become part of the family. Owen Two years after Amelia had passed away, Alie and Tyler welcomed Owen into their family. Alie recalled, “I don’t know if you ever feel ready for another pregnancy after you’ve buried your baby. I was just really scared, and it was really hard on me..I knew deep down that something wasn’t right and started pestering the doctors, trying to get an appointment and kept getting pushed off. I kept insisting that something was going on.” Alie was right. After finally getting an appointment with an opthamologist, Owen was diagnosed with nystagmus, strabismus and albinism. Owen’s eyes would rapidly wiggle back and forth. When he was around two years old, he received surgery to correct the nystagmus. A simple procedure that Alie and Tyler said has made all the difference along with glasses for Owen. Jack Alie and Tyler are no strangers to having children with disabilities. Their oldest Jack wasn’t diagnosed until he was a little bit older. Alie described that experience as, “When Jack was around one-and-a-half to two-years old, we started seeing some differences in him. He was evaluated for speech, so we did speech for maybe three to four years...he taught himself to read, but we notices his interactions with his peers were different. He struggles a little bit socially, and we finally got the diagnosis of Asperger’s” “By that time, we thought, ‘okay, third time around, we can handle this’ but it’s troubling for us that this was under our noses the whole time. It made it a little harder emotionally..we felt like we missed something that we could have helped him earlier.” Tyler said. He continued by saying, “We didn’t get that diagnosis just so that we could apply a label to him; we got that diagnosis so that we could learn how to help him.” “Sometimes We Have to be Flexible”
Doctors told Stephanie and Andy, their unborn child had anencephaly and wouldn't make it to birth. Grace impacted many in her 10 hrs and 32 min of life.
What is the MTHFR test? The MTHFR test or methylenetetrahydrofolate reductase test has become extremely popular due to a number of alternative medicine practitioners promoting it as the source of many chronic illnesses. But is it something you should worry about? This test is basically looking for two types of genetic mutations known as C677T and A1298C that affect the MTHFR enzyme involved in folate metabolism in your body. Proper MTHFR enzyme function ensures that homocysteine is properly metabolized to the amino acid methionine which then makes SAMe. SAMe is known as the “universal methyl donor” which is extremely important for serotonin, melatonin and your DNA. Folate is a B-vitamin and is important because it is at the heart of metabolism and the production of all your cells. Without it, nothing really works well so our list of symptoms and health problems would be extensive. The National Library of Medicine Genetics Reference states that MTHFR: "The MTHFR gene provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins. Methylenetetrahydrofolate reductase is important for a chemical reaction involving forms of the vitamin folate (also called vitamin B9). Specifically, this enzyme converts a molecule called 5,10-methylenetetrahydrofolate to a molecule called 5-methyltetrahydrofolate. This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine. The body uses methionine to make proteins and other important compounds." How common is it? Approximately 5-14% of the US population has two copies of the MTHFR mutation. It is the most common in those of Mediterranean descent and lowest in those of African ancestry. In America, about 25% of people who are Hispanic, and 10-15% of people who are Caucasian have two copies of C677T. Should you worry about Homocysteine and MTHFR? Although controversial in its connection with cardiovascular disease, elevated homocysteine levels may damage blood vessel walls leading to plaque (atherosclerosis) development and thus the potential for a heart attack, stroke or blood clot. Homocysteine requires healthy levels of folate, vitamin B12, and vitamin B6 to be metabolized properly. Recent data, however, shows that supplementation with these vitamins to lower homocysteine levels does not produce any benefit regarding cardiovascular risk reduction. This is most likely due to the complexity of cardiovascular disease which doesn't have a single cause such as elevated homocysteine. Elevated homocysteine levels, however, are rarely connected to a single genetic variant. Patients with elevated homocysteine should be thoroughly evaluated for the causes of elevated homocysteine such as: Hypothyroidism Obesity Diabetes Insulin resistance Inflammation High cholesterol High blood pressure Lack of physical activity Aging Smoking Medications (atorvastatin, fenofibrate, methotrexate, and nicotinic acid) Are there any disease connections to MTHFR? The only conditions with significant scientific support connected to MTHFR are the following: Spinda bifida Homocystinuria Age-related hearing loss Anencephaly (neural tube defect) Blood clots There are many claims on the internet that MTHFR is linked to cardiovascular disease, high blood pressure, stroke, glaucoma, certain cancers, and some psychiatric disorders. All of the studies related to these conditions with MTHFR have mixed results with some studies finding no association. So at this point, there is no clear scientific evidence that MTHFR alone has any connection to these disorders. This is a classic example of cherry picking by alternative practitioners extracting the information from the mixed studies that support their own agenda and ignoring the opposing evidence.
After finding out her unborn baby had Anencephaly, Summer decided to embrace her time with him by carrying him to term and then donate his organs.
46: Melody Nutall- Anencephaly and Making The Most Out of Life To Help Other Children and Families. On this podcast, episode Melody shares her story about her daughter Lailah Joy Heaven who was born with Anencephaly. She talks about when she first learned about her daughter's condition during the pregnancy. She describes in great detail the birth of her daughter and the planning process of donating her daughter's organs. In addition, she talks about how she parented her other young daughter during the pregnancy and birth. She talks about how she and her husband have grieved differently and how it has impacted their marriage. She shares how the death of her daughter has affected other areas of her life. Finally, Melody reveals her motivation and drive to help others going through similar circumstances. Join us as Melody shares her story.
The campaign centered in the US CDC birth defects branch to spread Folic acid fortification of Flour globally after the experience in the USA to prevent half of the neural tube defect births (spina bifida and Anencephaly) lacks the controls against risks of excessive folic acid exposure built into the US mandate. That campaign tries to suppress the growing evidence that high intakes of synthetic folic acid (not A natural form of the vitamin folate) especially in infants and elderly with low vitamin B 12 status may create risk of adverse effects and cognitive impairment. This dismissal of inconvenient emerging science, even at WHO, is a troubling insight into the dangers of advocacy versus evidence-based policy making. Bio: Doctor Irwin Rosenberg is a Professor of Nutrition and Medicine at Tufts University's USDA Human Nutrition Research Center on Aging (HNRCA) and the Friedman School of Nutritional Science and Policy. He was born and educated through college in Madison, Wisconsin and received his M.D. at Harvard Medical School with sub-specialty training in Internal Medicine Gastroenterology and Nutrition at the Massachusetts General Hospital and the Harvard Thorndike Memorial laboratory and at the National Institutes of Health (NIH). After serving as chair of Gastroenterology and Nutrition at the University of Chicago, Dr. Rosenberg was appointed Director of the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts and dean of the Friedman School of Nutrition Science and Policy. His research interests include the impact of diet and nutrition on aging brain functions with special reference to the vitamins Folic acid and B 12, as well as the regulation of homocysteine metabolism and maintenance of cerebrovascular integrity. Dr. Rosenberg was elected to the Institute of Medicine of the National Academy of Sciences and served as chair of its Food and Nutrition Board. He is the current editor of the Food and Nutrition Bulletin and former editor of the Nutrition Reviews.
The author of GOD LOVES UGLY and HEART MADE WHOLE talks with her husband and life coach Lucas Gifford about the negative and positive ways they processed and healed after the loss of their infant daughter, Goldie. This is an installment of Head to Heart by Christa Black Gifford and Lucas Gifford. For more information, please visit: www.christablack.com.
Introducing Head to Heart, a new podcast from Christa Black Gifford and her husband, Lucas.
This week, what causes anencephaly and exencephaly? Can electric cars recharge themselves from their wheels? How do astronomers determine the composition of exoplanets? Why do things move when I switch eyes while looking at them? Why do animals of the same species all look identical? Can we get dinosaur DNA out of amber? Do hands and feet get fat when a person puts on weight? Join Dr Chris for the latest round up of top questions from Talk Radio 702, South Africa. Like this podcast? Please help us by supporting the Naked Scientists
This week, what causes anencephaly and exencephaly? Can electric cars recharge themselves from their wheels? How do astronomers determine the composition of exoplanets? Why do things move when I switch eyes while looking at them? Why do animals of the same species all look identical? Can we get dinosaur DNA out of amber? Do hands and feet get fat when a person puts on weight? Join Dr Chris for the latest round up of top questions from Talk Radio 702, South Africa. Like this podcast? Please help us by supporting the Naked Scientists