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Baby has anencephaly
  • nonamejustmommy
    Posts: 162Member
    I don't post on here a lot but I need yall right now. I am 22 weeks pregnant and we just found out that my son has anencephaly. It means he has no skull and his brain gets more damaged the longer he is in-utero. It is fatal after birth but we are going to try and stop as much as we can while he is inside. We are trying to find a DR that does in-utero surgery and will fit a cap of some sort on his head to stop the damage. Please send all your positive energy/prayers that we will find one. I will keep you updated. Thank you all and BB )O(
    Life isn't about waiting for the storm to pass....It's about learning to dance in the rain.

    Bide within the Law you must, in perfect Love and perfect Trust.
    Live you must and let to live, fairly take and fairly give.

    These Eight words the Rede fulfill:

    "An Ye Harm None, Do What Ye Will"
  • OpheliaOphelia
    Posts: 3,340Member
    Sending good vibes your way.
    Nothing left to do but smile, smile, smile.. -Grateful Dead<3
  • [Deleted User]
    Posts: 1,551
    Oh holy shit sweetie. I am sending so so many prayers and love and light your way.

    >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D<
  • onetimeonetime
    Posts: 2,012Member
    I have a friend whose son has it. I hope everything works out the best way possible for you!
    Suck it up buttercup!
  • unforgivenunforgiven
    Posts: 12,700Confessional Manager
    I'll keep you in my prayers.  [-O< >:D<

    confessional-manager

    "What looks like torture is a time to rejoice
    What sounds like thunder is a comforting voice
    When what is beautiful looks broken and crushed
    And I say I don't know you
    But you say it's finished"
  • momofeveryonemomofeveryone
    Posts: 1,716Member

    your in my thoughts. one of my gf lost a baby to this, by the time things were discovered it was too late to do much, i hope you find the Dr.

    we got the house!!!!! i have worked so hard for 5 years to get us in a spot to buy! isnt it cute?!?!?!?
  • Katescrazymom
    Posts: 1,849Member
    I'm so sorry you are going through this.  Good luck finding a doctor, I'll be thinking of you, hoping for the best.
  • tothemoonandbacktothemoonandback
    Posts: 2,143Member
    Hugs to you, sweetie.  
    Imperfection is beauty, madness is genius, and it's better to be absolutely ridiculous than absolutely boring. - Marilyn Monroe
  • Lakegirl34
    Posts: 1,785Member
    Sending healing thoughts your and baby's way. >:D<
  • LifeofchaosLifeofchaos
    Posts: 984Member
    Sending prayers and hugs to you. Please keep us posted
  • chaosmomchaosmom
    Posts: 3,846Member
    Sending hugs & love your way. Hope you find a dr soon.
  • MyInnerGoddessMyInnerGoddess
    Posts: 1,558Member
    I am so sorry to hear that you are going through this. May I ask where you live?  I imagine you are willing to travel for the best neurosurgeon, but I have a little background with this and would like to help find you a surgeon if that is alright.  My heart, thoughts and prayers are with you.  This is a very difficult road and we are here to help you through it.
    "People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can't find them, make them."
    ~ George Bernard Shaw~
  • AnonUser30
    Posts: 1,916Guest
    Cleveland Clinic. If possible, Dr. Bingaman. If not him, there is going to be someone who can do it here.

    @momofeveryone can confirm that. So can @MellowYellow
  • MyInnerGoddessMyInnerGoddess
    Posts: 1,558Member
    LivinTheDream said:

    Cleveland Clinic. If possible, Dr. Bingaman. If not him, there is going to be someone who can do it here.

    @momofeveryone can confirm that. So can @MellowYellow



    Omg @Livinthedream!  That was one of the first names that came to mind.  Excellent suggestion.
    "People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can't find them, make them."
    ~ George Bernard Shaw~
  • MyInnerGoddessMyInnerGoddess
    Posts: 1,558Member
    Although, I think he does more epilepsy work?
    "People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can't find them, make them."
    ~ George Bernard Shaw~
  • PurpleFlowersPurpleFlowers
    Posts: 5,650Member
    Oh goodness, so sorry you are going through this. Thoughts and hugs for you and your baby. >:D<
    BTW, Dr. Ham , chief of neurosurgery at Childrens hospital of Michigan is awesome too
    Stay away from my chocolate and nobody gets hurt!

    I think I like who I am becoming...
  • irishlassirishlass
    Posts: 6,726Member
    Huge hugs!!  >:D<
    "Be who you are and say what you feel. Because those who matter don't mind and those who mind don't matter." - Dr. Seuss
  • WildandFree
    Posts: 1,598Member
    Ok... This part can be edited or commented if need be. I promise I'm going to write it as supportively as possible. Dr. Bingaman is the vice chairman neurosurgeon at the Cleveland Clinic, yes, and hes amazing, but the protocol for anecephaly is supportive not curative... I encourage you to research your options. The Anecephaly Foundation has lots of support and information on the latest studies being done geared towards finding a cure or at least more treatment (aside from preventative).. If you'd like to contact them their email is
    Info@asfhelp.Com and theyre based out in Texas.

    I'm sending you the biggest hugs and if you need anything, we moms are here to support you, listen to you.. Whatever you need. Take care and keep us updated!
  • AnonUser30
    Posts: 1,916Guest
    @MyInnerGoddess - he did my daughters surgery and was amazing. If he doesn't do the procedure, he will know someone who is very skilled at the needed procedure.

    If you would like me to call his office and get a name if be happy to. I have an excellent relationship with his staff.
  • momofdbbmomofdbb
    Posts: 9,094Member
    Hugs and prayers sent out. >:D<
    " Wibbly wobbly timey wimey ......." The Doctor
    " I'm a leafe on the wind..watch how I soar ." Wash :((
    " Oh the wall had it comming.' Sherlock Holmes
    yea I am geek !!
  • luckymama
    Posts: 94Member
    Your little boy is so lucky to have such a wonderful mother. You have to believe he can feel your love and healing energy. We are all sending your family strength.
  • Emmie
    Posts: 277Member
    Prayers for you and your son!
  • WildandFree
    Posts: 1,598Member
    I think I will just copy & paste what @luckymama said. That was beautiful. Hugs and prayers again <3
  • MistressHeidiMistressHeidi
    Posts: 973Member
    Lots of prayers and thoughts for you and your family.
  • BellaBefanaBellaBefana
    Posts: 8,237Member

    Barrow Neurosurgery in Phoenix may also be an option for you.  I don't know about anencephaly specifically, but I know they do many kinds of cutting edge surgical procedures.  They have a website you can look at.

    Best of luck, and lots of prayers.

    Please keep us posted.

    Bite me, cupcake!
  • GingersnapGingersnap
    Posts: 7,329Member
    Sending up a prayer for you and the wee one. 
    image
  • caroline
    Posts: 14Member
    gosh I have nothing useful in terms of medical help - but I'm so sorry that you are going through this and I hope that you are able to get the help for your little one

    -Caroline
  • nonamejustmommy
    Posts: 162Member
    I live in Augusta GA. My dr at Eisenhower (the hospital on base) and she (surprisingly) is very willing to help with whatever we choose. She contacted UC San Fran and is going to be in touch with Children's Hospital Philly trying to help me find a Dr. I will look into Dr. Bingaman. I would appreciate any help anyone can give me. 

    I have read everything out there. I know that the treatment is supportive but no where did I read that anyone tried anything. It seems like they just rolled over and accepted it. I am a Navy wife and I have insurance that will take care of us, and since it is an experimental procedure it might be free. Not a lot of women are willing to allow a Dr to do any surgery in-utero. I am selfish and I want my son for more than a few hours and anything I can do to achieve that I am going to. 
    Life isn't about waiting for the storm to pass....It's about learning to dance in the rain.

    Bide within the Law you must, in perfect Love and perfect Trust.
    Live you must and let to live, fairly take and fairly give.

    These Eight words the Rede fulfill:

    "An Ye Harm None, Do What Ye Will"
  • [Deleted User]
    Posts: 1,551
    @nonamejustmommy - you are just flat out amazing. I would be happy to help you any way I can, I have a few contacts at Children's Hospital in Boston and I will see if there is any experimental work being done there.

    I know @livinthedream has a really good network behind her as well.

    Please let us know what we can do as a community to support you- we have some amazing ladies here who can research and locate everything. >:D<
  • AnonUser30
    Posts: 1,916Guest
    @nonamejustmommy - I think that you are in for a battle that only you can decide to take. The choices and decisions that you are going to have to make in the next few months are heart wrenching and something no mother should have to go through. This is your life, and your baby, and your choice to fight. We stand behind that.

    And, just a note, experimental treatments are not free. We have done a few, and a few medications. What you end up with is a procedure that is not covered by insurance - and you still have to pay for the hospital charges. That part is very expensive (as you know).

    If you need to talk, vent, or cry please feel free to get in touch with me. I have not been in your shoes, but I have fought for my daughter when the world said that it wasn't worth it, wouldn't work, and my decision was crazy. They even said that I was sentencing her for a life not worth living. They were wrong. There may come a time when you change your mind, and know that is ok. The battle you are going into is a war - and only you know what you can take.

    What resources do you need? There are a lot of them - including a Make A Wish for your other children and you as you guys face this. There is also a perinatal hospice should you reach that point to help you through this time, and offer you support. While you may not be ready for that, know that it is there.
  • AnonUser30
    Posts: 1,916Guest
    Also, here is the major court case "Baby K" who survived 3 years with the condition. I am warning EVERYONE this Wiki has a number of VERY disturbing pictures. Open with care.....This mother was a Christian woman who fought for care for her baby, despite the doctors and hospitals refusal. She won. This is the case that you will need to bring up as you fight for your baby.

    http://en.wikipedia.org/wiki/Baby_K
  • nonamejustmommy
    Posts: 162Member
    I love you guys. I have a lot of friends that have children with special needs but only one who has fought the drs to save her child. Thank you for the advice on experimental treatments.

    I remember the baby k trial and such. We have decided that as long as they say he has a brain (we are still trying to figure out how much and which parts), and right now they say it is smaller than what is to be expected at 22 weeks, then we are going to fight. If he only has a brain stem then we will not prolong his suffering. Because we believe his quality of life is more important than our selfish desires. 

    I have decided either way to deliver via csection because the ones that are live a bit longer than the normal vaginal births. 
    Life isn't about waiting for the storm to pass....It's about learning to dance in the rain.

    Bide within the Law you must, in perfect Love and perfect Trust.
    Live you must and let to live, fairly take and fairly give.

    These Eight words the Rede fulfill:

    "An Ye Harm None, Do What Ye Will"
  • ZidashaZidasha
    Posts: 830Member
    Lot's of hugs and thoughts for you and your family.
    "I have a theory that placenta is brain matter I push out, so with each child I get dumber and dumber." ~ Unknown

  • AnonUser30
    Posts: 1,916Guest
    @nonamejistmommy - my daughter has a single hemisphere. And is on honor roll. ENTIRELY different circumstances though. This is your baby, and even a few days with her will help you and your family to know her. You have every right to hope and love her. And if anyone has a problem send them my way. They think they are "helping" by forcing you into an immediate decision - you will do what is best for your child and will know when and what that is when the time comes.
  • BeerWenchBeerWench
    Posts: 2,820Member
    Praying for you @nonamejustmommy

    Please keep us updated.
    :¦:-•:*'""*:•.-:¦:-•** She who leaves a trail of glitter is never forgotten**•-:¦:-•:*'""*:• -:¦:-
  • AnonUser30
    Posts: 1,916Guest
    @nonamejustmommy - just had an OB/GYN appointment at Cleveland Clinic. I asked my doctor about your situation. He said that one option you have is to have your records sent up here for review, and they will go through them and present ALL the options for you. He also said for you to take your time through this process and to follow your heart with what is best for you and your family.
  • kisseskaykisseskay
    Posts: 244Member
    I know exactly what you're going through... on june 6 2008 I had a stillborn due to anencephaly. we didn't find out until I was too far along... I had Bryce for 1 more month before I had to say goodbye... I still think about him every day I miss him greatly but I know he's in a better place good luck to you and your family I can't lie to you and say its gonna b n easy journey but know that they're scary mommy's out there sending our love and support for you
  • WildandFree
    Posts: 1,598Member
    You guys are simply amazing. That is all @kisseskay I'm very sorry for your loss but I'm glad that you did get the time you had with your little one. @nonamejustmommy I had never heard of anyone surviving with anencephaly before today. I'd only known what I had seen, and the case of Nicholas Coke was brought to my attention as well. He was born in December of 2008 & made it to his first birthday with respiratory intervention. It may be controversial, but you do what you feel is right and I commend you for fighting for what you believe in. Major hugs and support to you, momma..
  • MyInnerGoddessMyInnerGoddess
    Posts: 1,558Member
    I wanted to share this.  I do not know if you have run across it in any searches yet, but it is very inspiring and seems to have some resources.  Under the "decisions" tab, there is a link at the bottom of the page for an online support group also.  I imagine there is a wealth of information there.  Blessings and prayers.
    http://www.anencephalyhope.net/#!
    "People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can't find them, make them."
    ~ George Bernard Shaw~
  • Emmie
    Posts: 277Member
    Each family has to make the best decision for them (of course).  However, one consideration if you decide on going full out for any and all treatments available is that the reason any treatment at all is available is because families like yours have been willing to pursue them previously.

    You and your baby are the priority at this point.  But all medical treatments had to start somewhere, and so many things that were not previously treatable become manageable due to families being willing to allow aggressive treatments.

    I am praying for you and your precious son!  And of course I support whatever decisions that you and your family choose.  (((Hugs)))
  • stinkersmommystinkersmommy
    Posts: 1,322Member
    Duke Childrens hospital in NC has great Drs and isn't too far from u
    Prayers for you and your family
    Glitter Words
    [Glitterfy.com - *Glitter Words*]
  • CanadianMamaCanadianMama
    Posts: 9,614Administrator, Moderator
    Sending you and your baby my best thoughts!

    community-manager


  • kisseskaykisseskay
    Posts: 244Member
    @Mellowyellow thank you but I wish I had more time with him but it is as it is it taught me to appreciate life more
    @nonamejustmommy you are in my thoughts and prayers no matter what we scary mommies are standing by you <3<br />
  • SammieSammie
    Posts: 7,283Administrator, Moderator
    I am so very sorry you're going through this. I wish I could come up with something more meaningful and moving than that, because sorry does NOT cut it, but no words can describe the love and heartache I'm feeling for you right now. You're handling this with such grace and strength. You're an inspiration and an amazing mother. Continue to follow your heart and we will continue to pray, send positive thoughts, and offer all our love and support. >:D<

    community-manager


  • AloneOverseasAloneOverseas
    Posts: 2,240Member
    >:D< [-O<
    I love purple; I love cats. Imagine if cats were purple ...
  • collegecoed
    Posts: 162Member
    So sorry that you have to go through this. Please know that you and the baby are in our prayers for the best possible outcome!
  • AnonUser34
    Posts: 1,799Guest
    >:D< I'm so sorry! I'll keep you and your baby boy in my prayers!
  • olivias_mom
    Posts: 11Member

    God bless you and your family. We will keep all of you in our prayers.

     

  • anonymommy
    Posts: 1,430Member
    Huge hugs and prayers for you and your family. 
    >:D< [-O<
  • SammieSammie
    Posts: 7,283Administrator, Moderator
    I hope you're doing ok, mama. Ive been thinking of you!! >:D<

    community-manager


  • [Deleted User]
    Posts: 1,551
    @nonamejustmommy how are you doing!!! Many of us have been thinking of you!!!

    Xoxo

    >:D<
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