May 15th, 2022 fell in that horrible week between our first ultrasound that went wrong and the second ultrasound when the anencephaly diagnosis was confirmed. May 15th happens to be Anencephaly Awareness Day. Consider wearing green - the color of anencephaly awareness - this year on May 15th to stand in solidarity with our family and so many others who have learned the hard way what "anencephaly" means. And if you are given the chance, share with someone new the story of a little girl named Abigail - our precious wildflower who defied all the odds, lived full term, was born alive, and brought JOY in the midst of mourning.
I asked my support group what stats and facts they wish people knew about our babies with anencephaly. Then I realized, it would be a healthy exercise for me to answer that same question. So here's what I wish you knew about babies with anencephaly:
As always when reading about a topic like this from a non-professional like me, consult real medical professionals, please fact check and research the most up-to-date information, and acknowledge that it’s very possible I’ve made a mistake. I'd hope you wouldn't make any medical decision based on my opinion alone! This is just what I wish you knew about Anencephaly.
Anencephaly is a Life-Limiting Diagnosis
Read the testimonies on the Anencephaly Info website and you will find this common line throughout most of our experiences: “I’m sorry. Your baby has a neural tube defect that makes him/her incompatible with life.”
Anencephaly is an open neural tube defect that occurs in the first weeks of pregnancy, before the mom can usually even get a positive pregnancy test (even if she’s trying!). Because the neural tube doesn’t close, the skull never fully develops and leaves the baby’s brain exposed to the amniotic fluid in momma’s womb. Unfortunately this means that the baby’s brain is slowly worn down by the fluid. This does mean that there are varying levels of severity - although they aren’t classified and organized by the medical community. Some babies have a lot more left than Abigail had when she was born. We know of one baby who will be celebrating his first birthday in two days - he had a lot more left than Abby.
Most momma’s seem to find out about their baby’s diagnosis at their anatomy scan - that 18-20 week ultrasound that most people think of as the time when they can find out baby’s gender. It’s unusual to have an ultrasound at 11-12 weeks, but anencephaly can be seen and diagnosed that early if you have one done (as in our case when we went in for an ultrasound when the nurse struggled to get a heartbeat on the doppler monitor). You can also do a blood screening to see if your baby is at risk for anencephaly and some other diagnoses at 12 weeks - it’s called the quad screening.
The phrase “incompatible with life” is devastating and immediately leads to hopelessness. In my support group, made up of parents who chose to carry their baby in spite of the diagnosis, there are over 1,600 members. Many of us prefer the term “life-limiting diagnosis.” I know what my OB meant when she said what she said. But it wasn’t helpful. The truth is that our babies DO live (see #4). They are compatible with love.
Take Folic Acid!!!
Most cases of anencephaly have been prevented since the global recommendation of all women of childbearing age to take at least 400 mcg of folic acid. In America our foods are fortified with folic acid because the link between it and neural tube defects is so strong.
Some ladies in my support group asked for you to hear this: if you are a woman of child-bearing age, you NEED to take folic acid even if you aren’t trying to get pregnant. Some people said that you should have folic acid or contraception - but never neither. I would argue that you should have folic acid regardless of contraception. Every birth control method has a failure rate and folic acid isn’t going to hurt you. Why take the risk?
That said, many of us who have had these babies were taking folic acid (or prenatals that include the recommended amount). Only 70% of cases can be prevented with folic acid. Some of us have the mthfr mutation which makes it difficult to absorb folic acid but it’s not a universal truth. We don’t fully understand why this happens and we haven’t found answers.
In Abigail’s case, I’ve been taking prenatals with folic acid daily since 2015 due to PCOS at the recommendation of multiple doctors. When I mentioned this to my OB after Abby was diagnosed, she confessed to me that every time a patient has received this diagnosis, she has had them tested to see what their blood cell folic acid level was. It was always exactly where it should be. Now that I have had one baby with anencephaly, the recommendation for me and others like me is to take at least 4 mg of folic acid (10x the amount of normal women!). There is also growing evidence that taking folic acid alongside 1,000 mg of myo-inositol is the best prevention available.
Do not blame the mom, the dad, or yourself if you are the one with the baby! It is not your fault. The truth is that even the “experts” don’t know how to totally prevent this diagnosis. And, my friend, that is why this post is so necessary. Please wear green on Anencephaly Awareness Day and share Abby’s story with one new person today. We must spread awareness when there is still so much to be learned about anencephaly!
Most Babies with this Diagnosis are Aborted
Honestly, I hesitated to include this. I also had a draft of a post about Roe vs Wade last summer (2022) when that hit the fan. I wanted to give my voice with my unique situation to the blog but I never did. Frankly, people are just nasty on this topic - from both sides. Here’s all I’m going to say on the blog at the moment about this…
The stats on outcomes for babies with anencephaly are skewed. If you get this diagnosis right now, you are going to be told that your baby is going to die almost imminently. In fact, we were told frequently that Abigail would die in utero, would be a stillborn baby, and had basically no chance of making it full term. This one fact about anencephaly alone could have changed EVERYTHING about my pregnancy. Most people will choose to terminate the pregnancy when getting this news and because those deaths are lumped in with all babies who have anencephaly, people like me who want to keep their baby as long as possible are completely in the dark about what to expect.
We had to go every other week for a “heartbeat check” because the doctors were so sure she wouldn’t make it. Yes, many of these babies do die in utero, but not most! (see #4) There WAS hope and I didn’t find that out until much later in my pregnancy. And the thing that bothers me about this is that I typically read obsessively about topics when I get in these situations. I’m not most people. Most people will take their doctor at their word and most people won’t research to the extent I did. That’s not a problem. The problem is that we have a responsibility to correct the stats to give families realistic expectations.
Babies who are aborted and babies who are given the chance to live have drastically different outcomes. We shouldn’t lump them all into the same category. It’s not helpful to the medical community caring for these children and parents. It’s not helpful to the families making these horrible decisions.
Babies Who are Given the Chance Will Likely be Born Alive
The creator of my support group, Monika, has done extensive surveys and research on the topic of anencephaly - specifically as it relates to choosing to carry our babies to term. Most doctors, even in high-risk facilities, haven’t seen more than 1 or 2 babies born with anencephaly. Let’s #1 thank God for that because this is a tragic situation to be in. But let’s #2 forgive them for not knowing everything about anencephaly. How can they when so little is known about it and most of them have never seen a baby with anencephaly because it’s so rare (let alone rare to choose to carry!). This is why Monika’s research is so invaluable.
Most babies with anencephaly make it to at least 36 weeks gestation
Over 70% are born alive
Of the babies born alive…
About 27% will live less than an hour
40% will live between 1 to 24 hours (like Abigail)
25% will live 2-5 days
3% will live 6-9 days
4% will live at least 10 days. I know of two babies that made it longer than a month. One is in heaven after she lived two years and one is almost a year old.
If you are carrying a baby with anencephaly, I want you to know that while it’s totally possible you can lose your baby in utero, don’t give up hope or live your pregnancy in anxiety and fear. (Much easier to say than to practice, I know) You should also insist that your bag of water is left intact for as long as possible. Right now there are only two proven things that increase the chances your baby is born alive: not artificially rupturing the waters and possibly a c-section. Not all babies born via c-section are born alive. But there is evidence that c-section increases the chances and could even help your baby live longer. This should be carefully considered along with the risks that c-sections present to you and future pregnancies.
Spend your pregnancy making memories with your baby. Take the maternity pictures, paint your tummy, be a foodie tourist in your city (because your baby tastes what you eat!), bring that bump to your favorite places, play baby your favorite music, talk to baby often, get a pregnancy journal and do the cliche bump photos. Do it all! And all the while, pray and know that there is a good chance you can meet your baby alive.
No matter what, know that the moment your baby is placed in your arms, dead or alive, it will not matter to you what he/she looks like. You will be flooded with indescribable love. And you will not be alone. You will be in the presence of angels and the Almighty God Himself, there to welcome your child with you. It will be an unforgettable, sacred, and magical experience. There is joy in this journey, I promise.
The Risk to the Mother is Manageable (and in many cases quite Mild)
There is an increased risk of hemorrhaging to the mother if she has a stillborn baby. This risk is low for women like me who live in cities with multiple blood banks. But it still matters. There is one woman in my support group who almost died with her baby. It happens and that’s why I desperately wanted to do a blood drive at Abby’s memorial service. It didn’t work out but maybe we’ll be able to pull something off for a special anniversary in the future.
The main risk to the mother carrying a baby with anencephaly is polyhydramnios. This is when the fluid level in the womb builds up to more than normal. There are varying levels of it and it is easy to diagnose. Every time any woman gets a prenatal ultrasound, her fluid levels are measured. We think that the reason this is more common with anencephaly is because the babies stop swallowing or can’t keep up with swallowing the fluid in order to manage the levels.
Two thirds of us in my group that had polyhydramnios still had a live birth. In fact, in many cases polyhydramnios is actually a gift because it allows labor to start naturally. The theory is that without a big hard head pressing down on the cervix and without the hormones going from baby’s brain to momma’s body, these babies cannot start labor on their own. In our case, I had a mild case of polyhydramnios. Labor did start naturally (right on time at the end of our 39th week) and Abigail was born naturally with zero interventions.
Polyhydramnios is not always mild. Sometimes the fluid can build up to dangerous levels and stretch and damage the uterus. In those cases, there is a procedure called amniocentesis that can help. You may know this term because it is used to help in making some diagnoses. It can also be used to drain fluid levels. In our case it was never an option on the table because my polyhydramnios was so mild and amniocentesis always come with a risk of starting labor prematurely. I wasn’t willing to sacrifice one minute with Abigail and so it would have taken quite a bit more fluid for me to consider it.
And in so many of our cases, doctors will recommend that you induce early - both as a result of polyhydramnios and because they want to get the baby in your arms alive rather than risking the baby will die in the last couple weeks of your pregnancy before you give birth. It is quite common in our group to have our babies from 36-39 weeks because we are induced early. The decision about whether or not to induce, as well as all the other factors in a normal birth plan is so multi-faceted and difficult. It was the hardest thing for me. Extending my love to you. <3
These Babies are Ours Forever
This one is for everyone else. Parents and grandparents of these babies hold them in their hearts forever. Moms and dads think about their babies every day. So many people don’t say anything to us because they’re afraid of upsetting us. The truth is that I am already thinking of Abigail - you will never think about her when I’ve forgotten her because I will never forget her.
There is a mysterious and indescribable bond that parents have with their children. I cannot speak for dads, but I know as a mother that my memory of my children is not just emotional or mental - it is physical. As a woman, I cannot have a period without a brief physical reminder of labor. And prior to having children, as a woman with infertility that was a physical reminder of my longing for children I didn’t have. These babies are in our lives still - in our minds as we remember them, in our hearts as we long for them and miss them, in our bodies as we no longer fit in our clothes the same or feel phantom “kicks” from a baby who is no longer there, in our souls as with all creation we groan for Jesus to return and right all wrongs.
Please mention our babies. Use their names. Most likely, your fear that you will upset us is exactly opposite from what will happen. When you use Abigail’s name, I’m far more likely to beam an unexpected smile than to feel sad inside.
They’re ours forever, we’re aware of it today, and now you are aware of it today too. It’s Anencephaly Awareness Day - let someone know!
This is so good, Marcy. Thanks. Love you, continue thinking and praying of all of you. Grammy.