Starting Somewhere: Fetal Procedures for Anencephaly


If you work at a hospital or are a medical professional, please read this post.

Since Brielle’s diagnosis I’ve been working on how to care for anencephalic infants. From the recommendation of a neuroscientist friend, I bought “Fundamental Neuroscience” and “Atlas of Neuroscience.” I’ve spent weeks reading publications on PubMed, studying the brain, amniotic fluid, head trauma, anencephaly, how anencephaly occurs, etc. I find this all very fascinating and incredibly surprising how little is known about anencephaly. Quite frankly, nothing is known.

If you’ve been following my posts, you know that a few weeks ago a baby was given horrific care by a hospital in Tennessee. Why? Pure ignorance on how to care for an anencephalic neonate. So number one on my list was to establish a basic set of protocols for hospitals and practices to follow in regards to basic maternal and fetal/neonatal care. Number two, determine a way to to treat anencephalic infants with strong vital signs. Number three, find a way to treat anencephalic babies in utero and save their lives. Did I do this for Brielle’s sake? Absolutely, but I also did it for every other family in this situation.

Anencephaly is the most common neural tube defect, but 95% of the cases are aborted. That leaves only around 50-60 babies born a year in the United States. Very few physicians will see no more than a handful of cases in their career go to term. I think a big part of why there are so many abortions, is because parents are told their baby has no brain and is “incompatible with life,” they are presented with a situation that has no hope. This is something that needs to change, because these babies do have brains, and some of them do survive. For instance, the seventeen year old girl currently living with anencephaly. There is always hope.

I’m not sure if this is the right course of action. And this is definitely a more difficult plan, but we need to start somewhere. I propose we start here:

Fetal Procedures:
– MRI before 34 weeks for clear picture of brain matter before Tissue Factor is introduced in Amniotic Fluid at 34 weeks. (TGF is a suspected component of amniotic fluid that deteriorates brain matter after 34 weeks. By having MRI’s we can begin to see how fluid affects anencephalic brains and potentially when to deliver the baby for best possible outcomes.)
– MRI after 34 weeks to check on brain.
– Check for extracerebral hemorrhages and intracerebral hemorrhages via ultrasound or MRI. (This will better prepare the medical team at the time of delivery.)
– Colour doppler imaging to be done to monitor for AVM (arteriovenous malformation).
– Check for AVM, look to vein of Galen and frontal region of brain for AVM occurrence. This will be difficult in an anencephalic brain since their brains are organized differently.
– Continuous assessment of cardiac failure or hydrocephalus is required to monitor for AVM.
– Fetal behavior documented by mother. This needs to be known to better detect brain bleeds at time of birth.

Neonate Procedures:
– Vaginal birth increases risk of head trauma. Induction increases risk of head trauma.
– Delay cord clamping to reduce risk of brain bleeds. Specifically Intraventricular hemorrhage (most probable cause of death).
– Use of artificial dura and sterile gauze to cover brain. Dressing must be kept wet and baby must be kept warm.
– Monitor for signs of brain bleeds (could be six to eight hours before first signs present themselves):

– Fixed and dilated pupil. Eye will be positioned down and out on side of injury.
– Weakness of the extremities. Will be on the opposite side of the lesion.
– Loss of visual field. Will be on the opposite side of the lesion.
– Irregular respiration (apnea)
– Vomiting
– Confusion/lowered level of consciousness
– Seizures (especially if not seen in utero)
– Neck stiffness
– ECG/EKG (if showing other signs): Hypertension, Bradycardia, Cardiac arrhythmias, Cardiac arrest, Other changes
– Decreased muscle tone
– Lethargy
– Weak suck
– Excessive sleep
– Decreased reflexes
– Oxygen levels should be monitored
– BP should be monitored
– MRI to check for brain bleeds
– Regular state and federal required testing (this is important because this is currently not done for anencephalic infants)
Be aware that use of ECMO can cause intra axial brain bleed.

Maternal Procedures:
– Monitor for polyhydramnios during pregnancy.
– Monitor for amniotic fluid embolism during and after delivery. As well as during pregnancy.
– Increased risk for AF embolism with an anencephalic baby and polyhydramnios. This is due to neural debris in amniotic fluid.
– If the mother had polyhydramnios, monitor for postpartum hemorrhage.

Daniel 3:17-18


*Update on Brielle last night and our chat with the minister.*

Brielle was such a silly girl last night! We watched the pilot of the new show Supergirl and Brielle really liked it. She was kicking up a storm. We then watched the Bones and Sleepy Hollow crossover, Brielle liked Bones, but wasn’t too crazy about the Sleepy Hollow episode. She’s so funny, I have no idea what was so stimulating about Bones and Supergirl, but she had fun! Later that night David read her “Little Red Riding Minnie” and Brielle loved that story too! Which is good, David had been reading some duds that she was not enjoying.

*If you want to skip the theology talk, just read the last two paragraphs. And I’m not claiming an opinion on this at the moment, I feel like I am still in the process of forming an opinion. So make what you will of the theology talk.*

Okay, long update about our talk with the minister on Wednesday. So some background information about David and I. We were raised on opposite ends of the spectrum in regards to church theology. I was raised Church of Christ which tends to not believe in supernatural things, such as miraculous healing. David was raised Pentecostal, which believes in supernatural things. David grew up hearing about healings and such, I was raised to believe those stories were made up. Skepticism was pounded into my head from infancy, whereas David has a more natural skepticism, perhaps even a healthy dose of skepticism. Combine college with my upbringing and I hardly believe anything, not something I enjoy about myself. I must add, this is not a criticism of mine or David’s upbringing, but rather a statement of our past.

David has been praying for healing this entire pregnancy, I have not been open to that idea until the beginning of October. It took quite a bit of strong nudging from God for me to finally listen, again, skepticism. So I’ve spent the past month reading everything on the subject, learning as much as I can. And what I found was wild extremes that resulted in an even deeper confusion and ignorance on my part. But I did realize that the Bible was pretty clear that healing is something that happens and something as Christians that we should be open to. So David scheduled a meeting with someone we could speak to about all of this and give us advice. What do we need to do? Are we doing enough? Is our mindset off? David and I were both lost as to what we needed to do and we needed help, advice.

The minister explained to us the far right and left of healing theology. From those on my end, to those who believe it and claim it. Meaning those who say God has healed my (fill in the blank) and because I have declared it, it will be done. He explained the problems with both. One gives no room for God to work in our lives, the other makes it so that we have to do all the work in our lives and we end up battling our faith and belief instead of trusting God’s will.

He proposed that healing falls more in the middle of these two opinions. That it is something that still and does happen and that we should be open to it and “by prayer and petition, with thanksgiving, present your requests to God” (Philippians 4:6). But that God can answer in varying degrees. He could answer with a no, he could answer with a process of healing, and he could answer with miraculous healing.

If he answers no, it’s not because he doesn’t care or want to, but rather because there is more to the situation than we understand. Similar to how a parent handles a request from a three to four year old. Their request may be perfectly acceptable, but saying yes may not be the best option. Personally, I don’t like that answer, but really, no one does.

If he answers with a process of healing, he also has a reason for that. But this was interesting to me and something I had wondered about. Does God ever kind of heal, can his healing be tampered with, and does his healing take time? Well that’s what this option was about. The minister believes that when we pray for healing, not miraculous healing, that God answers with a process of healing. Meaning things begin to change, and if something goes wrong because of outside forces, such as medical or personal intervention, that can cause a problem and get in the way of what God intends.

Then we talked about instant or miraculous healing. And this was interesting, because I just assumed God would heal instantly. He said that sometimes God answers a healing prayer with instant healing, but that a lot of times, you need to pray for miraculous healing to get that instant result. And even still, God may not answer how you want.

We talked about wanting proof and how that isn’t a bad thing to ask for and doesn’t lessen our faith. We talked about how an ideal faith is trusting God with the outcome, no matter the result.

“If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.” Daniel 3: 17-18

Then we talked about what has happened in our situation. We told him about how Brielle suddenly developed teeth, her weight and measurements were suddenly brought into the normal range, the physical things I had felt when we had prayed, and the improvement in her mental state. We explained how Dr. B seemed confused and bewildered at times and we shared other experiences that had occurred during this pregnancy. The minister looked stunned and said that since we hadn’t seen a confirmation of full healing, that he believed God is in the process of healing her and that the things we had seen may have very well been confirmations that she is improving.

It was incredibly encouraging to hear affirmation from someone who has experience with this. David and I feel a bit lost at sea through all of this, and it was good to have someone to talk to and encourage us. We definitely needed it. Our doctor’s appointments aren’t what I would call encouraging or hopeful. They feel more soul crushing and pessimistic.

Brielle is 38 Weeks!


Brielle is 38 weeks! This past week has been very busy for us. Since October 18, Brielle has been back to her wiggly happy self, which has been a lot of fun for David and I. We missed our happy girl. Brielle and I have been taking it easy for the past few weeks, so I haven’t had too much to post about. I didn’t want to worry anyone, we just didn’t have anything to talk about!

Saturday our nephew brought down David’s mom, Brielle’s Bebe. David’s mom is getting on in years and we wanted her here for when Brielle was born and to check on her and see how she was doing. Since David works during the day, I’ve been busy taking care of her this week.

Sunday we went to church together as a family. I think Bebe enjoyed getting out and going to church and Brielle loved it! She wiggled and danced during all of the music (except for one song), in fact the whole day she was a wild animal! I woke up to Brielle dancing around and went to sleep with her dancing, she was awake the whole day! Monday Brielle slept pretty much the whole day, and I can’t blame her, she must have been exhausted.

Tuesday I took David’s mom to the hair salon I go to to have her hair colored and permed. It was a very long day for all three of us (Bebe, Brielle, and me). But Bebe’s hair looks beautiful now!

Wednesday David and I went to meet with a minister at our church, which I’ll talk about in another post. I think it went well. And then I rested for the rest of the day. I was completely exhausted yesterday.

Today (Thursday) has been a day of rest too. Brielle is getting very heavy and I am tired. But she is having fun, right now she is dancing to Ellie Goulding’s On My Mind. So as you can see we are not quite as exciting as we used to be.

The Princess and the Pea


For the past month Brielle hasn’t been super responsive. She’s still been active, but wasn’t responding like she used to. Since Sunday she’s been more like herself. She’s been craving certain foods again (like grapes, which mommy isn’t super crazy about) and responding to music and books again.

Today I felt well enough to go grocery shopping, which I haven’t been able to do in a while (I did it without pain and without swelling!). I bought Brielle a new book of fairy tales and when we got home I read her “The Princess and the Pea.” She liked that story! Silly girl did lots of wiggles when I read about the “fake” princesses, I guess she thought they were funny!


God is Healing Brielle!


God is healing Brielle and doing great things! I woke up Monday morning and was able to get in and out of bed by myself, as well as do basic everyday things I had not been able to do previously, due to my high fluid levels. Each day I was able to do more and more and my stomach size became smaller and smaller.

Today we had an ultrasound appointment and talked to Dr. B. My fluid levels had dropped from 47 cm to 34 cm! I dropped that much fluid in four days! That is not done. When Dr. B called us back to his office to review the scans, he watched me walk into the office and just looked at me with an extremely puzzled expression. David has been laughing about it all day, because Dr. B looked completely baffled. He asked, “Have you been exercising?” I laughed, “NO.” We talked about my fluid levels and he was very happy to see them down and have talks of amnio reduction off the table. But he was thoroughly confused. The impression that I got was that polyhydramnios does not, suddenly, or rapidly decrease. And the only explanation for this rapid decrease is that Brielle’s swallowing reflex has been healed. Which means God is healing Brielle’s brain and head!

We looked over Brielle’s scans and measurements. Our last measurements she was very underweight and it looked like she would be a very small baby. She’s 5 and a half pounds today. At 36 weeks a baby should be about 6 pounds. Her legs are a week and a half ahead, meaning she has really long legs! Not too much of a surprise considering her parents are tall. Her abdomen, which had been small, had considerable growth, still behind, but not by much.

And now here is the really cool part. Tooth buds develop in a fetus in the first trimester. Brielle has not had tooth buds (meaning she would not have teeth). As we were going over her scans today, David asked what a white line was across her face, near her mouth. Dr. B in a bit of a surprised tone says, “Those are…tooth buds, she has tooth buds.” It is rare for an anencephalic baby to have teeth. Brielle has developed teeth sometime in the past week! At first I just thought that was cool, but then I started thinking how long it takes for a fetus to make tooth buds (weeks) and then how awesome God is to have given her tooth buds. Later it hit me, he wouldn’t have given her tooth buds if she wasn’t going to need them. Brielle is going to need to chew!

David and I are overwhelmed with joy and excitement! Brielle is not completely healed, yet, but she is well on her way. God is doing great and amazing things with her! Things that are not done. I have prayed that God would do this in a way that would bring him the most glory and praise, this week was not the week for full healing, because it wasn’t the right moment. We eagerly await the right moment and in the meantime are incredibly thankful and awe struck of God and his work. He has heard our cries and has stepped in and begun healing her. We have an awesome God!! And we believe God will heal Brielle!

David and I will not stop praying for healing until she is completely healed. We are also giving prayers of thanks and praise. Please join us in thanking God for the miracles he is performing with our baby and asking him to continue healing her. I am humbled and deeply, greatly, thankful that I serve such an amazing and merciful God!

(We will need to request the picture with her teeth because we did not receive that one. The images we did receive were blurry because she is getting so big and because she was wiggling all over the place! Once we have it, we will post it.)