Doctor insights on:
Medicine For Anencephaly
Comfort care only!:
Nobody can nor should help prolong the "lives" of these poor neonates. Anencephalic newborns are devoid of any chance of meaningful interaction with the environment and never attain consciousness. Comfort care is all that is ethically permissible for these dramatic cases.
Take 4-5 mg daily of Folic Acid daily throughout your reproductive life, to prevent this from recurring in future pregnancies. ...Read more
Failure of closure: The fetus is busy around 20-30 days in when the nervous system starts forming along a line like a trench. The trench folds in on itself and begins to form a tube, sealing itself in the middle first and moving toward both ends like two zippers. When the top end fails to close, many brain structures don't form & we have anencephaly.At the bottom, we get spina bifida. ...Read more
3 weeks after con-: Ception, an embryo's neural plate develops a midline groove; its edges over-fold & close to form a neural tube. Anencephaly is the most severe of the Neural Tube Defects caused by interaction of one of several genes with environmental factors. Low maternal folate (folic acid) level at conception is a main cause; MTHFR, a main gene iinvolved. Fertile women who take daily Folic Acid have lower risk of NTD's. ...Read more
Sorry for your loss: I've been through about half a dozen of these but never in your shoes. Another 30+ weeks of pregnancy carrying this burden may or may not be something you can bear when the outcome is so predictable & bad. Consult your spouse, spiritual adviser, & pray. Do what fits for your needs & grieve for what might have been. See & hold baby whatever you do to say good bye. Followup with a geneticist later. ...Read more
Up to parents: This is always fatal within hours or days. The management choices depend on the parents. Some accept early termination after confirmation. Some choose to deliver and spend time with the baby, avoiding attempts to prolong the act of dying. If they choose to deliver, I encourage the parents to see and hold the baby, and have a chance to say goodbye. This has been shown to speed emotional recovery ...Read more
Hopefully, the truth: The difficulty of transmitting this info to the parents is much less than the sadness & loss the parents will feel when they get the info. Pregnancy is one of life's gambles & up to 4% have an unexpected event after delivery. Accurate information on how/why/recurrence risks are all part of the problem management. Either the OB or a geneticist /counselor should fill in the blanks. ...Read more
Increased anomalies: Women with diabetes that is poorly controlled in the weeks prior to and the first weeks of pregnancy have a higher chance of having a fetus with abnormalities of the heart and other parts of the body. It is important that they see a doctor and improve glycemic control before even trying to conceive. Screening and ultrasound studies can detect many of these abnormalities, but prevention is key. ...Read more
Loose link: All of the neural tube defects from anencephaly down down the back to spina bifida are all loosely linked through numerous genes. Recurrence risk after a first affected child is minimal, quoted as 1.9%, but would encompass any of the related defects. Most are considered single chance events, and pre-pregnancy supplement of Folic Acid has reduced the frequency. ...Read more
Hi I had my first child with anencephaly. What preventive measures need to be taken for the next baby?
37wks+2days pregnant. Feelin scared & anxious of losin this healthy baby in this last bit. Lost 2 bubs to anencephaly in past. Wat can I do? Jus want safe
Natural feelinngs: With your past experience it is easy for you to remain an emotional mess, even after a normal delivery and healthy initial exam. Surround yourself with supportive people who are willing to listen. By the time this baby is five you may relax. Just hang in there. ...Read more
Lost 2 bubs to anencephaly. Now preg with healthy 3rd baby no NTD's.Have had vag bleedin this preg all told"unexplained".Any tips to gt thru last 8wks?
Bedrest: You should take it easy. Not too much activity. Frequent doctor visits and close monitoring. May be best to avoid sexual activity during the final weeks. Babys born 8 weeks early typically do very well these days. ...Read more
Don't know: I do not know. I have not heard that. I would suggest though that hair perms contain chemicals that can leach in to the body through the scalp and are in general not beneficial especially if pregnant or trying to get pregnant. Avoid them. Anencephaly has multiple causes and at best chemicals may contribute...Have seen no evidence yet they are causal. ...Read more
Genetic influence: Anencephaly is one of the many forms of neural tube defects that can occur. The factors are likely present on several chromosomes, making it a polygenic rather than single gene in origin. Recurrence risk of any form of ntd to a previously affected couple is a few percent. ...Read more
Measles in pregnancy: If a pregnant woman has measles it depends on the trimester what effects it will have on the fetus. It can cause brain anomalies as well. You OB should be the one counselling you on this, and the ultra sound of the fetus tells a lot about such problems. Talk to your ob. ...Read more
Sporadic malformatn: The fetal nervous system first forms as a groove that folds in on itself and begins to close from the middle outward to the top & bottom. If the bottom doesn't close, spina bifida develops. If the top doesn't, anencephaly occurs. Recurrence risk to any affected mom ~1-2% makes this non-genetic. There is some evidence that taking Folic Acid before pregnancy & up to 3m can help prevent it. ...Read more
No: By definition, the infant with anencephaly went through the stages of fetal development without major brain parts. The primitive tissues of forebrain development come together to form a brain, or not, well before a month into fetal life. It cannot start over. Anencephaly patients can live a day or two under some circumstances but most pass shortly after birth if not prior to delivery. ...Read more
The position: The developing brain and spinal cord go through a predictable pattern. The primitive neural tissue folds on itself to begin forming the spinal elements. It actually closes the fold starting in the middle and progresses toward the top and bottom. Like closing a zipper from the middle out. If the fold doesn't close at the tom, anencephaly develops. If it doesn't close at the bottom. Spina bifida. ...Read more
I get little sweaty at night sometimes & im 8wks preg with Hx of anencephaly bubs. Worried my body temp increase may cause damage to baby? Winter here
Body temperature: Small fluctuations in body temperature are a normal part of physiology and are not a known cause of fetal abnormalities. ...Read more
I lost a daughter to anencephaly 5 months ago. I would love to get pregnant again, but I am very scared? .Is there anyway anencephaly can happen again
Yes, but: Your original risk was that of the general population that runs 1/1000 live births, but your recurrence risk climbs to 4%. There are various nutritional & genetic factors that go into your overall risk of some unexpected outcome with pregnancy & a visit to a geneticist affiliated with a med school or children's hospital may be your best information source. Take time to grieve but don't give up. ...Read more
How early can anencephaly be detected? Had 8wk scan & dr said the head looked gd but couldn't confirm until 12wks as she couldn't see skull? Hx of anen
Primitive Reflexes: Such babies have brain stems, but lack the higher cortex. Without the brain stem they wouldn't breath and their hearts wouldn't beat. The brain stem accounts for primitive reflexes, which I have seen people mistake for a conscious response. ...Read more
See below: They have a brain stem, which will control breathing and heart rate. ...Read more
Lost baby in 16 week with termination due to anencephaly. Biopsy report has notes "anencephaly, hypo plastic maxilla. What does that mean?
Findings expected in: anencephaly. We now believe that the cranium does not close, leaving the brain exposed. By 11 to 12 weeks, extension of the legs is sufficient to bash the normal brain against the uterine wall, destroying most of it by 13 to 14 weeks. The markedly reduced brain volume causes deformation of craniofacial structures. Had the cranium closed, your fetus would've had a normal face. ...Read more
26 wks pregnant. Lost 2 babies to anencephaly previously. This bubs ok so far. Extremely scared of losing this healthy baby. Will my bub make it?
Imaging?: So sorry about your loss! That is just devastating! Have you had an ultrasound with this baby? The anatomy of anencephaly is easy to diagnose on ultrasound. However, there are smaller more subtle neural tube defects which could be missed. Ask your ob about the details of ultrasound. Get ultrasound ASAP if have not had one yet! Good luck! ...Read more
Anencephaly is the abscence of a closed cranial cavity (head) and implies incomplete brain development/function. Essentially, anencephaly is being born without functioning brain.
Spinal bifida is an incomplete closure of the neural tube. There is no implication of brain development or brain function.
While there may be paralysis in spina bifida, the brain can function normally in many cases. ...Read more
Lost 2 bubs to anencephaly, pregn with 3rd healthy baby 6.5mos. Stressed+fight alot with hubby. Can this harm baby? Have tried therapy unsuccessfully :- (
No: Brain growth in utero concides with growth of the body and skull and the brain has already spent 9 months growing and responding to stimuli in the womb. A full brain would not grow correclty from stem cells after birth. ...Read more
Lost baby last year due to anencephaly. Used multivitamins with folic acid for 1year and 5mg folic acid from 2months. Folate levels 477 now. Can I plan?
Risk assessment: I am so sorry for your loss. I'm glad to see you are taking the folate (folic acid) supplements. As you know anencephaly is multifactorial, with folate (folic acid) deficiency as well as genetic factors. There is an emerging genetics we are learning about and you certainly want to consider consultation with genetics and see your OB for a visit as well. Best of luck and remember anencephaly is rare. ...Read more
I have a Hx of Anencephaly in 2 precious pregnancies... I'm currently pregnant. I'm on high dose folic acid. Can too much folic acid be harmful?
No.: Folic acid is a water-soluble vitamin which is a co-factor necessary for adequate production of energy necessary for all of our cell's energy needs--particularly the rapidly-dividing cells of the embryo and fetus. You could take double-blinded or triple the amount prescribed to you, and most all would be washed out of the body within 24 hours. ...Read more
At 13 weeks pregnant I found out my baby had anencephaly and sadly had to have labour induced, this was 1 week ago when is it ok to have sex again?
When not bleeding: As soon as you feel emotionally and physically ready it is ok to resume sexual activity - my general advice would be after you have stopped bleeding for a few days. Take Folic Acid 5 mg every day for the rest of your reproductive life (i.e. Until menopause, bilateral tubal ligation or hysterectomy), regardless of plans for pregnancy and birth control used or not! Best of luck. ...Read more
Suffered anencephaly. Planning to conceive in 3 months. Is folic acid 5 mg once a day is fine or twice a day? Any tests to take before getting pregnant
Yes that is fine: 4 to 5 mg of folic acid likely reduces your recurrence risk to that of the general population risk. You must take it daily, as folic acid is eliminated from the system in a day, being a water soluble vitamin. The dose of folic acid in a prenatal vitamin is 0.6 mg. Just be sure you're taking it every day when you possibly might become pregnant.. ...Read more