#anencephaly Instagram Photos & Videos

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Latest #anencephaly Posts

  • This is Amelia's tiny hat, which was still too big for her. I'm so thankful to have crossed paths with a local doula who is so dedicated to helping moms and parents like me. Today, she recorded me sharing Amelia's story as part of a training that she is putting together to help other doulas offer support to grieving parents, including those who may be choosing to terminate a very loved and wanted pregnancy. I absolutely love that the most awful thing I've ever lived through is at least able to help other parents experiencing something similar. #alwaysinourhearts #anencephaly
  • This is Amelia's tiny hat, which was still too big for her. I'm so thankful to have crossed paths with a local doula who is so dedicated to helping moms and parents like me. Today, she recorded me sharing Amelia's story as part of a training that she is putting together to help other doulas offer support to grieving parents, including those who may be choosing to terminate a very loved and wanted pregnancy. I absolutely love that the most awful thing I've ever lived through is at least able to help other parents experiencing something similar. #alwaysinourhearts #anencephaly

  •  51  2  14 November, 2019
  • This was one of the moments I thought my heart would stop. This moment I knew Norah has been stuck too long to survive. This is the moment I was ready to give up.... but you see that man?? He was stern but gentle he coached me away from fear and made me dig deep to finish what we started. When I see this picture all I can think is.... ———— I’m so proud of us ———— We decided to see this thru together. We were open and honest with each other the 6 months we prepared for this day. We talked openly about how we refused to let grief tear us apart. We spoke our needs into our relationship and were open to accept the others. We openly discussed fear and plans to counter anything the devil put on our hearts. 
Since this traumatic/tragic day our relationship has been so different. We have been more kind and loving. We let the little stuff go. We have been more supportive of each other. We have been more receptive of the others emotional needs. There is this deeper meaning to our relationship and a gentle love between us. 
I’m proud of us for working SO DAMN HARD for this. We have done the hard stuff, the changing of our brains and hearts, training our brains with coping skills. 
We deeply know what TRULY matters... #anencephalyawareness #anencephaly #anencephalyangel #terminalpregnancy #stillbirth #infantloss #faith #marriage (Amazing photo by Brandi)
  • This was one of the moments I thought my heart would stop. This moment I knew Norah has been stuck too long to survive. This is the moment I was ready to give up.... but you see that man?? He was stern but gentle he coached me away from fear and made me dig deep to finish what we started. When I see this picture all I can think is.... ———— I’m so proud of us ———— We decided to see this thru together. We were open and honest with each other the 6 months we prepared for this day. We talked openly about how we refused to let grief tear us apart. We spoke our needs into our relationship and were open to accept the others. We openly discussed fear and plans to counter anything the devil put on our hearts.
    Since this traumatic/tragic day our relationship has been so different. We have been more kind and loving. We let the little stuff go. We have been more supportive of each other. We have been more receptive of the others emotional needs. There is this deeper meaning to our relationship and a gentle love between us.
    I’m proud of us for working SO DAMN HARD for this. We have done the hard stuff, the changing of our brains and hearts, training our brains with coping skills.
    We deeply know what TRULY matters... #anencephalyawareness #anencephaly #anencephalyangel #terminalpregnancy #stillbirth #infantloss #faith #marriage (Amazing photo by Brandi)

  •  211  19  14 November, 2019
  • Elke dag denk ik aan je lieve schat,
We hebben niet eens een beetje tijd samen gehad,
Wanneer je ter wereld kwam was je stil,
Je werd al snel kil,
Terwijl mijn hart van liefde voor jou overliep,
Terwijl mijn hart brak van verdriet,
Ik krijg de puzzel van mijn hart niet meer heel,
Want jij bent het ontbrekende deel...
#anencephaly 
#babylossawareness 
#stillborn
  • Elke dag denk ik aan je lieve schat,
    We hebben niet eens een beetje tijd samen gehad,
    Wanneer je ter wereld kwam was je stil,
    Je werd al snel kil,
    Terwijl mijn hart van liefde voor jou overliep,
    Terwijl mijn hart brak van verdriet,
    Ik krijg de puzzel van mijn hart niet meer heel,
    Want jij bent het ontbrekende deel...
    #anencephaly
    #babylossawareness
    #stillborn

  •  18  2  12 November, 2019
  • I applied to nursing school knowing I was pregnant with Norah but not knowing her diagnosis. I decided to apply and accept my position because a 3rd child would mean more diapers, clothes, food, school fees, furniture, more expenses on vacations.... SO many things. 
I wanted to push thru no matter how hard it was going to be to give my babies a better life. 
Little did I know Norah would only be staying with us for 9 months. 
In August I started school with her and I’ll finish school in honor of her. She moves and pushes me more than I can explain. “This pain is a price to pay to know this love”

#anencephalyawareness #anencephaly #exencephaly #familiy #terminalpregnancy #motivation #angelmom #nursingstudent
  • I applied to nursing school knowing I was pregnant with Norah but not knowing her diagnosis. I decided to apply and accept my position because a 3rd child would mean more diapers, clothes, food, school fees, furniture, more expenses on vacations.... SO many things.
    I wanted to push thru no matter how hard it was going to be to give my babies a better life.
    Little did I know Norah would only be staying with us for 9 months.
    In August I started school with her and I’ll finish school in honor of her. She moves and pushes me more than I can explain. “This pain is a price to pay to know this love”

    #anencephalyawareness #anencephaly #exencephaly #familiy #terminalpregnancy #motivation #angelmom #nursingstudent

  •  96  2  12 November, 2019
  • No words needed 💚
  • No words needed 💚

  •  25  2  9 November, 2019
  • Some days I’m sad.... some days I miss Norah so desperately I could stay in bed forever. Some days I cry a lot.

But every day... every single day I remember it’s my highest honor to be your momma. It’s a true privilege to wake up every day and be able to hug, kiss, love and watch you grow. 
So I will always get up and show up for my babies because I know the gut wrenching, absolutely excruciating pain of the alternative. #anencephaly #lifeafterloss #stillbirth #exencephaly #faith #mom
  • Some days I’m sad.... some days I miss Norah so desperately I could stay in bed forever. Some days I cry a lot.

    But every day... every single day I remember it’s my highest honor to be your momma. It’s a true privilege to wake up every day and be able to hug, kiss, love and watch you grow.
    So I will always get up and show up for my babies because I know the gut wrenching, absolutely excruciating pain of the alternative. #anencephaly #lifeafterloss #stillbirth #exencephaly #faith #mom

  •  123  2  9 November, 2019
  • Abortion...What kind of "Pro-" are you? “When you’re a “blogger” who writes about life experiences, life lessons, and you want to speak your truth, there are a few subjects that are very sensitive...
In the name of staying objective, it makes me very hesitant to dabble in them; as my point of view or standpoint on the matter could alter, or even vex my audience’s view of me (or trust in me).” I wrote this piece 7 years ago and in 2019 when reading the news, watching debates and partaking in conversations on this subject, I’ve notice that little as changed... so has my POV on the matter
Read, comment, share with your friends and follow! Copy/paste link below in your browser or click on link on my bio

https://life-lessons-libations.squarespace.com/home/2019/11/7/pro-life-pro-choice-or-both-the-aborted-standpoint
#ABORTION #ABORTIONARGUMENT #ABUSE #ANENCEPHALY #BACKALLEYABORTION #CIRCUMSTANCES #ETHICS #PROABORTION #PROLIFE #PROCHOICE #RAPE #RESPONSIBILITY #LIFELESSONS #MYPOV
  • Abortion...What kind of "Pro-" are you? “When you’re a “blogger” who writes about life experiences, life lessons, and you want to speak your truth, there are a few subjects that are very sensitive...
    In the name of staying objective, it makes me very hesitant to dabble in them; as my point of view or standpoint on the matter could alter, or even vex my audience’s view of me (or trust in me).” I wrote this piece 7 years ago and in 2019 when reading the news, watching debates and partaking in conversations on this subject, I’ve notice that little as changed... so has my POV on the matter
    Read, comment, share with your friends and follow! Copy/paste link below in your browser or click on link on my bio

    https://life-lessons-libations.squarespace.com/home/2019/11/7/pro-life-pro-choice-or-both-the-aborted-standpoint
    #ABORTION #ABORTIONARGUMENT #ABUSE #ANENCEPHALY #BACKALLEYABORTION #CIRCUMSTANCES #ETHICS #PROABORTION #PROLIFE #PROCHOICE #RAPE #RESPONSIBILITY #LIFELESSONS #MYPOV

  •  7  0  8 November, 2019
  • 🔰🔰🔰
@learngenetic
#معرفی_بیماری

Anencephaly ⭕️
یکی از نادر ترین و عجیب ترین نقائص ژنتیکی آننسفالیست (#Anencephaly). یک اختلال مغزی ناشی از نقص در کانال عصبی است neural tube defect (NTD) و به دلیل عدم بسته‌شدن انتهای کانال عصبی ایجاد میشود. باعث عدم تشکیل قسمت اعظم مغز، جمجمه و پوست سر در این نوزادان  می‌شود.
⭕️
هرچند کودکانی که دچار این اختلال هستند، تنها فاقد بخش قدامی مغز هستند، اما این قسمت، بزرگترین بخش مغز است که عمدتاً حاوی نیمکره‌های مغزی و نئوکورتکس است و مسئول قوای شناختی عالی یعنی تفکر شناخته می‌شود. 
این نوزادان اکثرا درد را حس نمیکنند.
⭕️
مصرف مناسب فولیک اسید، قبل و در دوران بارداری تا میزان زیادی از این اتفاق جلوگیری میکند. علت شناخته شده ژنتیکی ای برای آننسفالی تشخیص داده نشده است و ارثی نیز نمیباشد. تعداد زیادی نقص ژنتیکی و عوامل محیطی در ایجاد آن دخیل هستند.
⭕️ نوازادان یا قبل از تولد میمیرند یا نهایتا تا چند هفته بعد از تولد زنده میمانند. 
نزدیکترین حالت به آننسفالی، میکروسفالی است.

@learngenetic
  • 🔰🔰🔰
    @learngenetic
    #معرفی_بیماری

    Anencephaly ⭕️
    یکی از نادر ترین و عجیب ترین نقائص ژنتیکی آننسفالیست ( #Anencephaly). یک اختلال مغزی ناشی از نقص در کانال عصبی است neural tube defect (NTD) و به دلیل عدم بسته‌شدن انتهای کانال عصبی ایجاد میشود. باعث عدم تشکیل قسمت اعظم مغز، جمجمه و پوست سر در این نوزادان  می‌شود.
    ⭕️
    هرچند کودکانی که دچار این اختلال هستند، تنها فاقد بخش قدامی مغز هستند، اما این قسمت، بزرگترین بخش مغز است که عمدتاً حاوی نیمکره‌های مغزی و نئوکورتکس است و مسئول قوای شناختی عالی یعنی تفکر شناخته می‌شود. 
    این نوزادان اکثرا درد را حس نمیکنند.
    ⭕️
    مصرف مناسب فولیک اسید، قبل و در دوران بارداری تا میزان زیادی از این اتفاق جلوگیری میکند. علت شناخته شده ژنتیکی ای برای آننسفالی تشخیص داده نشده است و ارثی نیز نمیباشد. تعداد زیادی نقص ژنتیکی و عوامل محیطی در ایجاد آن دخیل هستند.
    ⭕️ نوازادان یا قبل از تولد میمیرند یا نهایتا تا چند هفته بعد از تولد زنده میمانند.
    نزدیکترین حالت به آننسفالی، میکروسفالی است.

    @learngenetic

  •  697  50  8 November, 2019
  • “You have to take a lot of extra care to teach others no matter what your child can or can’t do. They actually can do a lot, and chances are they can do more than you’ll feel like they are able to do when you first find out about your child’s diagnosis.” Tyler and Alie are the parents of three children who were each diagnosed with different disabilities: Asperger’s syndrome, Anencephaly, and Albinism. And even though their daughter with Anencephaly did not survive more than a couple days after birth, each of these children has brought them so much happiness. “We’ve all embraced his albinism,” Allie said. “When he was a baby, I was in that grieving process, and I wished every day that he didn’t have this and that it would just go away, and why us, why us. Now my perspective is totally changed; I couldn’t see him any other way as it’s just who he is.” Alie’s and Tyler’s oldest child, Jack, was diagnosed with Asperger’s syndrome when he was four years old. They were surprised they did not realize that he had a disability beforehand. In fact, they found out their younger two children had disabilities before he was diagnosed. Jack has a hard time socially and cognitively, especially understanding emotions. When they realized something was different about him, they went to see the doctor. “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,” said Tyler. He and Alie feel sad that they didn’t find out about his diagnosis sooner so that they could help him progress before now. “We like more information; we feel empowered with information,” Alie said. “We feel very strongly as a family that it helps our kids to know their diagnoses, so Owen knows he has Albinism, and Jack knows that he has Asperger’s, and it’s just very factual. This is what it is. It opens up doors for us to talk about it and normalize it, because this is our normal.” “My engineer brain tells me that rather than looking at it as a label that you apply to people, you really think about a symptom and a fix,” said Tyler.
#albinism #aspergers #autism #anencephaly #orangesocks #orangesocksday
  • “You have to take a lot of extra care to teach others no matter what your child can or can’t do. They actually can do a lot, and chances are they can do more than you’ll feel like they are able to do when you first find out about your child’s diagnosis.” Tyler and Alie are the parents of three children who were each diagnosed with different disabilities: Asperger’s syndrome, Anencephaly, and Albinism. And even though their daughter with Anencephaly did not survive more than a couple days after birth, each of these children has brought them so much happiness. “We’ve all embraced his albinism,” Allie said. “When he was a baby, I was in that grieving process, and I wished every day that he didn’t have this and that it would just go away, and why us, why us. Now my perspective is totally changed; I couldn’t see him any other way as it’s just who he is.” Alie’s and Tyler’s oldest child, Jack, was diagnosed with Asperger’s syndrome when he was four years old. They were surprised they did not realize that he had a disability beforehand. In fact, they found out their younger two children had disabilities before he was diagnosed. Jack has a hard time socially and cognitively, especially understanding emotions. When they realized something was different about him, they went to see the doctor. “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,” said Tyler. He and Alie feel sad that they didn’t find out about his diagnosis sooner so that they could help him progress before now. “We like more information; we feel empowered with information,” Alie said. “We feel very strongly as a family that it helps our kids to know their diagnoses, so Owen knows he has Albinism, and Jack knows that he has Asperger’s, and it’s just very factual. This is what it is. It opens up doors for us to talk about it and normalize it, because this is our normal.” “My engineer brain tells me that rather than looking at it as a label that you apply to people, you really think about a symptom and a fix,” said Tyler.
    #albinism #aspergers #autism #anencephaly #orangesocks #orangesocksday

  •  112  1  7 November, 2019
  • Remembering our little Carson on his “sweet 16” today! Pulling out the scrapbook pages to reminisce his sweet brief existence! Love you Carson! #Anencephaly #sweetbaby #gonebutneverforgotten ❤️❤️❤️💙💙💙💙❤️❤️❤️
  • Remembering our little Carson on his “sweet 16” today! Pulling out the scrapbook pages to reminisce his sweet brief existence! Love you Carson! #Anencephaly #sweetbaby #gonebutneverforgotten ❤️❤️❤️💙💙💙💙❤️❤️❤️

  •  238  61  7 November, 2019
  • I have not been feeling well for a few days, honestly I thought I was just sad and anxious with everything going on... after ruling out big scary life threatening things on Friday in the ER but not really getting answers... I came in to the hospital OB floor today (because I started feeling worse) to be evaluated. My blood pressure has been verrrryyy high and I’ve been diagnosed with Postpartum preeclampsia. 
I’m being admitting for hopefully just 24 hours on a mag drip. 
Being here is so hard. I just miss Norah so much..... 💔💔💔 #anencephaly #pregnancyloss #stillbirth #terminalpregnancy
  • I have not been feeling well for a few days, honestly I thought I was just sad and anxious with everything going on... after ruling out big scary life threatening things on Friday in the ER but not really getting answers... I came in to the hospital OB floor today (because I started feeling worse) to be evaluated. My blood pressure has been verrrryyy high and I’ve been diagnosed with Postpartum preeclampsia.
    I’m being admitting for hopefully just 24 hours on a mag drip.
    Being here is so hard. I just miss Norah so much..... 💔💔💔 #anencephaly #pregnancyloss #stillbirth #terminalpregnancy

  •  49  6  29 October, 2019
  • Seven days ago we were checking into the hospital... you were alive and swimming in my belly. 
Seven days ago we had an interesting delivery and at 6:09pm you were born sleeping already in the arms of Jesus. 
Seven days and the physical evidence of you ever being here is quickly fading. I updated the family calendar...our induction day/your birthday got erased. My body is shrinking back to before you. The signs of delivery are slowing. I started unpacking and putting away our bag from the hospital.... You feel so far away.... like you are slipping from my grasp. My heart is so desperate for your touch. I know you are always with me but the lack of your physical presence makes my body ache. 
Another stage in grief. Every turn we take it’s a harsh reminder that world doesn’t stop spinning for anyone or anything. 💗💗Each day you have is so important. #anencephaly #terminalpregnancy #pregnancyloss #griefjourney #momma
  • Seven days ago we were checking into the hospital... you were alive and swimming in my belly.
    Seven days ago we had an interesting delivery and at 6:09pm you were born sleeping already in the arms of Jesus.
    Seven days and the physical evidence of you ever being here is quickly fading. I updated the family calendar...our induction day/your birthday got erased. My body is shrinking back to before you. The signs of delivery are slowing. I started unpacking and putting away our bag from the hospital.... You feel so far away.... like you are slipping from my grasp. My heart is so desperate for your touch. I know you are always with me but the lack of your physical presence makes my body ache.
    Another stage in grief. Every turn we take it’s a harsh reminder that world doesn’t stop spinning for anyone or anything. 💗💗Each day you have is so important. #anencephaly #terminalpregnancy #pregnancyloss #griefjourney #momma

  •  129  9  28 October, 2019
  • There are two tiny impressionable hearts walking this journey of loss with Brian and I. 
Every single day is an opportunity to teach them that sometimes life is so heartbreakingly sad, that sometime emotions get so big we have to cry, and sometimes we need extra grace and love. 
Every single day is an opportunity for me to teach them emotional awareness, healthy grieving and coping by SHOWING them each step I’m taking. 
There are aspects of Norah’s story that we’ve kept from Rosalie but almost all of it we have been upfront and honest with her. We have been working with her to recognize when she is sad or anxious about the situation and most importantly we have been working with her on how to process it. 
I can’t protect them from this harsh world for ever but I’ll do my absolute best to get them ready to face it head on. 
Every single day I have two little babes who don’t understand but still need their kind present mother..... every single day they give me reasons to get out of bed and try to make them proud. 
I will live a life Norah would be proud of. 💗 I will not let this make me lose perspective and I will not let sadness and depression ever convince me that the work I’m doing daily isn’t important.... because the work in myself and with my family is the MOST important.

#pregnancyloss #stillbirth #stillbornstillloved #griefjourney #anencephaly #terminalpregnancy
  • There are two tiny impressionable hearts walking this journey of loss with Brian and I.
    Every single day is an opportunity to teach them that sometimes life is so heartbreakingly sad, that sometime emotions get so big we have to cry, and sometimes we need extra grace and love.
    Every single day is an opportunity for me to teach them emotional awareness, healthy grieving and coping by SHOWING them each step I’m taking.
    There are aspects of Norah’s story that we’ve kept from Rosalie but almost all of it we have been upfront and honest with her. We have been working with her to recognize when she is sad or anxious about the situation and most importantly we have been working with her on how to process it.
    I can’t protect them from this harsh world for ever but I’ll do my absolute best to get them ready to face it head on.
    Every single day I have two little babes who don’t understand but still need their kind present mother..... every single day they give me reasons to get out of bed and try to make them proud.
    I will live a life Norah would be proud of. 💗 I will not let this make me lose perspective and I will not let sadness and depression ever convince me that the work I’m doing daily isn’t important.... because the work in myself and with my family is the MOST important.

    #pregnancyloss #stillbirth #stillbornstillloved #griefjourney #anencephaly #terminalpregnancy

  •  92  2  27 October, 2019
  • “Through waters uncharted my soul will embark
I'll follow Your voice straight into the dark
And if from the course You intend I depart
Speak to the sails of my wandering heart
Like the wind You'll guide
Clear the skies before me
And I'll glide this open sea
Like the stars Your word
Will align my voyage
And remind me where I've been
And where I am going”

#anencephaly #pregnancyloss #terminalpregnancy
  • “Through waters uncharted my soul will embark
    I'll follow Your voice straight into the dark
    And if from the course You intend I depart
    Speak to the sails of my wandering heart
    Like the wind You'll guide
    Clear the skies before me
    And I'll glide this open sea
    Like the stars Your word
    Will align my voyage
    And remind me where I've been
    And where I am going”

    #anencephaly #pregnancyloss #terminalpregnancy

  •  159  10  25 October, 2019
  • When parents are met with an antenatal diagnosis that is deemed ‘incompatible with life’ by medical professionals, they then are met with a series of decisions. The decision may not change the outcome of loss and grief, yet it is important that families are given the support and space to make a decision for how this loss plays out. Everyone is unique. For Temperance’s family, that was about continuing with her pregnancy until she decided to be born.

You can read more about their diagnosis on anencephaly in pregnancy, the subsequent weeks of pregnancy and Temperance’s birth, together with some love filled pictures of their time together, over on the blog today. Please come back and share your support for Alex @alwaysourtemperance.
.
“Then there was silence and she left the room to get another sonographer. Matt and I started feeling nervous but nothing could prepare us for the shock to come. Our baby had anencephaly. She wasn’t expected to survive to term or the birth, let alone live outside the womb. We were told our best option was to terminate. I don’t really remember the next few weeks. I know at one point I had agreed to terminate. But by 15 weeks I knew I had to carry our baby to term.” #babyloss #stillbirth #anencephaly #diversityinloss #alwaysourtemperance #bereavedmother
  • When parents are met with an antenatal diagnosis that is deemed ‘incompatible with life’ by medical professionals, they then are met with a series of decisions. The decision may not change the outcome of loss and grief, yet it is important that families are given the support and space to make a decision for how this loss plays out. Everyone is unique. For Temperance’s family, that was about continuing with her pregnancy until she decided to be born.

    You can read more about their diagnosis on anencephaly in pregnancy, the subsequent weeks of pregnancy and Temperance’s birth, together with some love filled pictures of their time together, over on the blog today. Please come back and share your support for Alex @alwaysourtemperance.
    .
    “Then there was silence and she left the room to get another sonographer. Matt and I started feeling nervous but nothing could prepare us for the shock to come. Our baby had anencephaly. She wasn’t expected to survive to term or the birth, let alone live outside the womb. We were told our best option was to terminate. I don’t really remember the next few weeks. I know at one point I had agreed to terminate. But by 15 weeks I knew I had to carry our baby to term.” #babyloss #stillbirth #anencephaly #diversityinloss #alwaysourtemperance #bereavedmother

  •  72  11  25 October, 2019
  • You would have been 4 months old today. I wonder what you’d be like. Kenzie and Jax would have been having so much fun with you. 
Never forgotten, always missed, forever loved 💜 #scarlettaria #anencephaly
  • You would have been 4 months old today. I wonder what you’d be like. Kenzie and Jax would have been having so much fun with you.
    Never forgotten, always missed, forever loved 💜 #scarlettaria #anencephaly

  •  51  5  25 October, 2019
  • Watching my baby leave with the funeral home staff and then leaving the hospital empty handed was hands down the hardest part of my life. I felt as if my heart would actually stop. 
The weight of grief in those moments felt like they were going to physically crush me. I’m not certain why WE were given this journey to walk because right I don’t feel strong enough. 
But until I can get up and walk this journey .... I’ll kneel and pray and crawl through the times when I just don’t have the strength. 
I feel so empty and lonely without her...But I’ll keep moving forward.... soul crushing and painful I’ll learn a new life with Norah outside of my body and into my heart. 💗💗 Hug your babies.... put your phones down and be grateful for time.... it’s a gift that should be treasured 💗💗 #anencephaly #exencephaly #pregnancyloss #terminalpregnancy
  • Watching my baby leave with the funeral home staff and then leaving the hospital empty handed was hands down the hardest part of my life. I felt as if my heart would actually stop.
    The weight of grief in those moments felt like they were going to physically crush me. I’m not certain why WE were given this journey to walk because right I don’t feel strong enough.
    But until I can get up and walk this journey .... I’ll kneel and pray and crawl through the times when I just don’t have the strength.
    I feel so empty and lonely without her...But I’ll keep moving forward.... soul crushing and painful I’ll learn a new life with Norah outside of my body and into my heart. 💗💗 Hug your babies.... put your phones down and be grateful for time.... it’s a gift that should be treasured 💗💗 #anencephaly #exencephaly #pregnancyloss #terminalpregnancy

  •  92  8  23 October, 2019

Top #anencephaly Posts

  • This was one of the moments I thought my heart would stop. This moment I knew Norah has been stuck too long to survive. This is the moment I was ready to give up.... but you see that man?? He was stern but gentle he coached me away from fear and made me dig deep to finish what we started. When I see this picture all I can think is.... ———— I’m so proud of us ———— We decided to see this thru together. We were open and honest with each other the 6 months we prepared for this day. We talked openly about how we refused to let grief tear us apart. We spoke our needs into our relationship and were open to accept the others. We openly discussed fear and plans to counter anything the devil put on our hearts. 
Since this traumatic/tragic day our relationship has been so different. We have been more kind and loving. We let the little stuff go. We have been more supportive of each other. We have been more receptive of the others emotional needs. There is this deeper meaning to our relationship and a gentle love between us. 
I’m proud of us for working SO DAMN HARD for this. We have done the hard stuff, the changing of our brains and hearts, training our brains with coping skills. 
We deeply know what TRULY matters... #anencephalyawareness #anencephaly #anencephalyangel #terminalpregnancy #stillbirth #infantloss #faith #marriage (Amazing photo by Brandi)
  • This was one of the moments I thought my heart would stop. This moment I knew Norah has been stuck too long to survive. This is the moment I was ready to give up.... but you see that man?? He was stern but gentle he coached me away from fear and made me dig deep to finish what we started. When I see this picture all I can think is.... ———— I’m so proud of us ———— We decided to see this thru together. We were open and honest with each other the 6 months we prepared for this day. We talked openly about how we refused to let grief tear us apart. We spoke our needs into our relationship and were open to accept the others. We openly discussed fear and plans to counter anything the devil put on our hearts.
    Since this traumatic/tragic day our relationship has been so different. We have been more kind and loving. We let the little stuff go. We have been more supportive of each other. We have been more receptive of the others emotional needs. There is this deeper meaning to our relationship and a gentle love between us.
    I’m proud of us for working SO DAMN HARD for this. We have done the hard stuff, the changing of our brains and hearts, training our brains with coping skills.
    We deeply know what TRULY matters... #anencephalyawareness #anencephaly #anencephalyangel #terminalpregnancy #stillbirth #infantloss #faith #marriage (Amazing photo by Brandi)

  •  211  19  14 November, 2019
  • Soy Yarela y esta es mi historia.

Muchas veces quise escribir en esta página pero no podía, hoy decidí hacerlo para que conozcan a mi guerrera Emmita, la princesa más hermosa.

En diciembre del 2018 quedé embarazada con 38 años, soy diabética pero no me cuidaba y tuve que volver a mi tratamiento para tener un embarazo estable .Primera eco todo bien ahí estábamos con mi pareja feliz ya que llevábamos un año buscando este bebé. Cómo mi embarazo era de alto riesgo fui traslada al hospital para controlarme ahí, estuve hospitalizada porque mis glicemias eran altas, pero todo bien con el bebé.

A los 3 meses, a la segunda  eco todo bien, solo dijo el doctor que no pudo medirle la masa encefálica porque el bebé se movía mucho, pero no vi preocupación así que me fui a casa. Seguían mis controles, todo bien, glicemias controladas. Llegamos al 5 mes y aún no me hacían la tercera eco pregunté porque yo estaba feliz y quería saber qué era. A los 5 meses y medio me hicieron la 3 eco, yo feliz fui con mi hijo mayor y de repente el doctor me dice Mamita usted no se ha echo ecografías? Le dije usted mismo me hizo la última... por qué pasa algo ? No me asuste? Me dice “es para asustarse, tu bebé viene con problemas” el mundo se me vino abajo, “viene con una Microcefalia severa, debes volver mañana para realizarte una nueva eco para ver su corazón”. Volví al hospital nuevamente rezando que sea un error pero no, confirman una Microcefalia, Patología cardíaca, displasia esquelética y que venía con un brazo quebrado y era una niña, desde ese minuto me quise morir. 
Hospitalizada nuevamente, exámenes, más ecos, pasaron los meses y a los 8 meses me hicieron una resonancia, Dios otra mala noticia, mi bebé ya no tenía Microcefalia Ella venía con Anencefalia, no tenía nada de cerebro y que no iba a vivir. Me preguntan si yo quería hacer una cesárea al otro día y con mi esposo dijimos No ... porque queremos que nazca y que no sería yo quien la mate,  que solo Dios sabía su destino.

Los médicos apoyaron y a la semana 37 + 1 rompí bolsa saliendo de un control.  CONTINÚA EN COMENTARIOS... #testimoniosxlavida #anencephaly #anencefalia
  • Soy Yarela y esta es mi historia.

    Muchas veces quise escribir en esta página pero no podía, hoy decidí hacerlo para que conozcan a mi guerrera Emmita, la princesa más hermosa.

    En diciembre del 2018 quedé embarazada con 38 años, soy diabética pero no me cuidaba y tuve que volver a mi tratamiento para tener un embarazo estable .Primera eco todo bien ahí estábamos con mi pareja feliz ya que llevábamos un año buscando este bebé. Cómo mi embarazo era de alto riesgo fui traslada al hospital para controlarme ahí, estuve hospitalizada porque mis glicemias eran altas, pero todo bien con el bebé.

    A los 3 meses, a la segunda eco todo bien, solo dijo el doctor que no pudo medirle la masa encefálica porque el bebé se movía mucho, pero no vi preocupación así que me fui a casa. Seguían mis controles, todo bien, glicemias controladas. Llegamos al 5 mes y aún no me hacían la tercera eco pregunté porque yo estaba feliz y quería saber qué era. A los 5 meses y medio me hicieron la 3 eco, yo feliz fui con mi hijo mayor y de repente el doctor me dice Mamita usted no se ha echo ecografías? Le dije usted mismo me hizo la última... por qué pasa algo ? No me asuste? Me dice “es para asustarse, tu bebé viene con problemas” el mundo se me vino abajo, “viene con una Microcefalia severa, debes volver mañana para realizarte una nueva eco para ver su corazón”. Volví al hospital nuevamente rezando que sea un error pero no, confirman una Microcefalia, Patología cardíaca, displasia esquelética y que venía con un brazo quebrado y era una niña, desde ese minuto me quise morir.
    Hospitalizada nuevamente, exámenes, más ecos, pasaron los meses y a los 8 meses me hicieron una resonancia, Dios otra mala noticia, mi bebé ya no tenía Microcefalia Ella venía con Anencefalia, no tenía nada de cerebro y que no iba a vivir. Me preguntan si yo quería hacer una cesárea al otro día y con mi esposo dijimos No ... porque queremos que nazca y que no sería yo quien la mate, que solo Dios sabía su destino.

    Los médicos apoyaron y a la semana 37 + 1 rompí bolsa saliendo de un control. CONTINÚA EN COMENTARIOS... #testimoniosxlavida #anencephaly #anencefalia

  •  515  38  8 August, 2019
  • One thing about grief that I will never understand is how one small, little, insignificant thing can bring you back and give you the most vivid memory. Sometimes you may not even know what it was that brings you back, sometimes you purposely avoid something because you know it will remind you of things you don’t want to think about. ~
Tonight was one of the unexpected moments. It was vivid and struck me to the core.  How I kept it together, I will never know. I saw a man tonight that reminded me of the funeral home director. A man who I had to hand my little boy off to and say my final goodbyes. The memory of kissing Wyatt goodbye one last time. Dressed in his angel gown, the only piece of clothing he actually wore, and laying him into the transport bag. A bag that looked more like a thirty one bag. As he gave his condolences I watched him walk away with my baby.  A memory I will never forget. Now I’m not sure how this man I saw tonight brought me back to that place since realistically they look NOTHING alike but there I was, in the middle of Jimmy Johns watching it all replay. ~
#wyattdouglas #anencephaly #anencephalyangel #anencephalyfamily #angelgown #mcdonaldsdoublechin #griefmemories #griefsucks #stillbornstillloved #grievingmother #imisshim
  • One thing about grief that I will never understand is how one small, little, insignificant thing can bring you back and give you the most vivid memory. Sometimes you may not even know what it was that brings you back, sometimes you purposely avoid something because you know it will remind you of things you don’t want to think about. ~
    Tonight was one of the unexpected moments. It was vivid and struck me to the core. How I kept it together, I will never know. I saw a man tonight that reminded me of the funeral home director. A man who I had to hand my little boy off to and say my final goodbyes. The memory of kissing Wyatt goodbye one last time. Dressed in his angel gown, the only piece of clothing he actually wore, and laying him into the transport bag. A bag that looked more like a thirty one bag. As he gave his condolences I watched him walk away with my baby. A memory I will never forget. Now I’m not sure how this man I saw tonight brought me back to that place since realistically they look NOTHING alike but there I was, in the middle of Jimmy Johns watching it all replay. ~
    #wyattdouglas #anencephaly #anencephalyangel #anencephalyfamily #angelgown #mcdonaldsdoublechin #griefmemories #griefsucks #stillbornstillloved #grievingmother #imisshim

  •  142  16  5 September, 2019
  • the only thing worse then being blind is having sight but no vision

When Jake was born his encephalocele was removed from the back of his head, which is brain grew into, Jakes brain grew into the fluid filled sack and was removed. Jake was left with less then half a brain and what he was left with was abnormal brain tissue and fluid. 
When people say to me “ Are you sure he’s blind “ his eyes are so blue?’ There is nothing wrong with Jakes eyes, Jake hasn’t got the occipital cortex which is the back of the brain, Jake is missing the right hand side of the brain which also affects the eye sight In the left hand side of the eyes. 
I know that Jake has some how used different pathways to try and have vision, I know this because I am his mother. 
Jake is living proof that you can have less then half a brain and still be HAPPY still have a MAGICAL LIFE, and see and feel love...... I have never stopped trying to let Jake be as independent as possible

I have been told by therapists “ it’s unsafe to have Jake on your hip, outside of his wheelchair.. “ Jake should be in his wheelchair at all times’ Do not feed him on the couch, do not feel at the kitchen table, Jake has a wheelchair. 
I will not be that parent that puts their child in their wheel chair all day every day because it’s easier... They say it’s safer but if I didn’t teach Jake to sit in a normal lounge he wouldn’t be able to hold himself up. If I didn’t teach Jake to sit on a kitchen table chair he wouldn’t be capable ... you don’t know what your capable of until you try. 
Jakes a star and I will never let anyone dim his sparkle, he shines and as long as I’m his mum he’ll always be like a star 
Shining bright, being magical, being BEAUTIFUL ✨✨✨✨✨✨✨ - this morning we sat in the beautiful sun, smelling and feeling beautiful roses. 🌹
  • the only thing worse then being blind is having sight but no vision

    When Jake was born his encephalocele was removed from the back of his head, which is brain grew into, Jakes brain grew into the fluid filled sack and was removed. Jake was left with less then half a brain and what he was left with was abnormal brain tissue and fluid.
    When people say to me “ Are you sure he’s blind “ his eyes are so blue?’ There is nothing wrong with Jakes eyes, Jake hasn’t got the occipital cortex which is the back of the brain, Jake is missing the right hand side of the brain which also affects the eye sight In the left hand side of the eyes.
    I know that Jake has some how used different pathways to try and have vision, I know this because I am his mother.
    Jake is living proof that you can have less then half a brain and still be HAPPY still have a MAGICAL LIFE, and see and feel love...... I have never stopped trying to let Jake be as independent as possible

    I have been told by therapists “ it’s unsafe to have Jake on your hip, outside of his wheelchair.. “ Jake should be in his wheelchair at all times’ Do not feed him on the couch, do not feel at the kitchen table, Jake has a wheelchair.
    I will not be that parent that puts their child in their wheel chair all day every day because it’s easier... They say it’s safer but if I didn’t teach Jake to sit in a normal lounge he wouldn’t be able to hold himself up. If I didn’t teach Jake to sit on a kitchen table chair he wouldn’t be capable ... you don’t know what your capable of until you try.
    Jakes a star and I will never let anyone dim his sparkle, he shines and as long as I’m his mum he’ll always be like a star
    Shining bright, being magical, being BEAUTIFUL ✨✨✨✨✨✨✨ - this morning we sat in the beautiful sun, smelling and feeling beautiful roses. 🌹

  •  172  18  11 October, 2018
  • Some days I’m sad.... some days I miss Norah so desperately I could stay in bed forever. Some days I cry a lot.

But every day... every single day I remember it’s my highest honor to be your momma. It’s a true privilege to wake up every day and be able to hug, kiss, love and watch you grow. 
So I will always get up and show up for my babies because I know the gut wrenching, absolutely excruciating pain of the alternative. #anencephaly #lifeafterloss #stillbirth #exencephaly #faith #mom
  • Some days I’m sad.... some days I miss Norah so desperately I could stay in bed forever. Some days I cry a lot.

    But every day... every single day I remember it’s my highest honor to be your momma. It’s a true privilege to wake up every day and be able to hug, kiss, love and watch you grow.
    So I will always get up and show up for my babies because I know the gut wrenching, absolutely excruciating pain of the alternative. #anencephaly #lifeafterloss #stillbirth #exencephaly #faith #mom

  •  123  2  9 November, 2019
  • This seemed like an easy one for all of you!!! Or you are actually learning from my page! Either way I'm happy! Yes this is anencephaly which by definition means no brain. Typically if this defect is found on ultrasound, the patient will be encouraged to have an elective abortion due to the severity of this defect. Most of the time, this defect is incompatible with life, with babies dying within minutes/hours after birth. There are a rare amount of cases of babies being born who can survive this- but it is documented. This case is not an abortion however, this is a spontaneous miscarriage which occurred at about 16 weeks gestation. Just looking at the specimen, you can tell it came out intact because the fetus is still attached to the umbilical cord and placenta. An abortion at 16 weeks would be received in pieces due to the procedure. This defect is called a neural tube defect and has been linked to a deficiency in folic acid. In most cases, a defect such as this does not occur if a woman is not taking her prenatals so this patient isn't to blame for this, there are multiple other factors involved. It does not hurt, however to increase your consumption of folic acid/folate during pregnancy to promote health cell growth. For documentation purposes when we receive a baby like this to the lab we autopsy it and examine the placenta. The autopsy and placenta are normal in this case, with the cause if death clearly being the brain/skull defect. 
#iheartautopsy #mysterydiagnosis #pathology #anencephaly #birthdefect #embryology #fetus #fetalautopsy #autopsy #miscarriage #abortion #maternity #pregnancy #pregnant #brain #skull #science #ob #obstetrics
  • This seemed like an easy one for all of you!!! Or you are actually learning from my page! Either way I'm happy! Yes this is anencephaly which by definition means no brain. Typically if this defect is found on ultrasound, the patient will be encouraged to have an elective abortion due to the severity of this defect. Most of the time, this defect is incompatible with life, with babies dying within minutes/hours after birth. There are a rare amount of cases of babies being born who can survive this- but it is documented. This case is not an abortion however, this is a spontaneous miscarriage which occurred at about 16 weeks gestation. Just looking at the specimen, you can tell it came out intact because the fetus is still attached to the umbilical cord and placenta. An abortion at 16 weeks would be received in pieces due to the procedure. This defect is called a neural tube defect and has been linked to a deficiency in folic acid. In most cases, a defect such as this does not occur if a woman is not taking her prenatals so this patient isn't to blame for this, there are multiple other factors involved. It does not hurt, however to increase your consumption of folic acid/folate during pregnancy to promote health cell growth. For documentation purposes when we receive a baby like this to the lab we autopsy it and examine the placenta. The autopsy and placenta are normal in this case, with the cause if death clearly being the brain/skull defect.
    #iheartautopsy #mysterydiagnosis #pathology #anencephaly #birthdefect #embryology #fetus #fetalautopsy #autopsy #miscarriage #abortion #maternity #pregnancy #pregnant #brain #skull #science #ob #obstetrics

  •  1,222  157  23 September, 2014
  • Preserved fetus with anencephaly in a medical teaching institution. Anencephaly means "without brain". This is a defect that occurs in early pregnancy when the brain and skull do not develop properly. This defect is usually not compatible with life although there are some reported cases of babies living with this defect. Anencephaly can be seen early on in the pregnancy and termination is usually recommended because the defect is so deadly. This is caused because of a neural tube defect and this is why it is recommended to take prenatal vitamins and eat foods rich in folic acid to prevent defects like this from happening. 
Photo @subhikhaled 
#iheartautopsy #pregnant #pregnancy #anencephaly #birthdefect #fetus #baby #healtheducation #women #womenshealth #med #medical #medicina #medschool #medstudent
  • Preserved fetus with anencephaly in a medical teaching institution. Anencephaly means "without brain". This is a defect that occurs in early pregnancy when the brain and skull do not develop properly. This defect is usually not compatible with life although there are some reported cases of babies living with this defect. Anencephaly can be seen early on in the pregnancy and termination is usually recommended because the defect is so deadly. This is caused because of a neural tube defect and this is why it is recommended to take prenatal vitamins and eat foods rich in folic acid to prevent defects like this from happening.
    Photo @subhikhaled
    #iheartautopsy #pregnant #pregnancy #anencephaly #birthdefect #fetus #baby #healtheducation #women #womenshealth #med #medical #medicina #medschool #medstudent

  •  5,610  1,442  20 March, 2015