Today is the day. It’s hard to believe that in five hours we will be holding sweet Brielle. David and I are doing our best, but we’re a nervous wreck. Thank you for the prayers and love during this time, we can’t tell you how much it means to us. Here’s a picture of Brielle with the Coke bear. We had a lot of fun with her this week and made a lot of good memories with her and my family.
We had our scan today and the technician was really nice. She knew this was probably our last scan and took extra time and let us watch Brielle move around. I cried my eyes out. I pretty much cried my eyes out the whole appointment. My fluid is in the mid 40’s, so it’s holding steady, which is really good. Now the bad news. Brielle isn’t growing. Since last months measurements she has not put on weight, in fact these measurements had her smaller. Dr. B said that probably wasn‘t right and she was probably around the same size as last time. Her length and bones have grown, but her weight has not. Until Dr. B saw that he was fine with us waiting another 2-3 weeks to have her, with weekly ultrasounds to make sure she was okay, of course. When he saw that her weight had not changed, he made it very clear we needed to deliver either tomorrow, Monday, or Tuesday. We’re leaning towards Monday, and I’ll call tomorrow and schedule the c-section. Then I can give everyone a time and stuff.
Another bit of good news, he is very optimistic about her brain being highly functional. She is very responsive and active still and she’s showing only good signs (weight being the only bad one). So he is optimistic. He’s doing his best to give Brielle her best chance at living and I am incredibly grateful. If her brain matter is strong enough then she has a pretty good chance. But if it’s not, the vessels in her brain may burst after birth and she may bleed out quickly or slowly, depending on the bleed.
I’m terrified and heartbroken. I do not want my sweet Brielle to leave me. But either her brain is causing a nutritional problem or my placenta isn’t giving her what she needs. I don’t want her to go and this is the moment I’ve dreaded for the past twenty weeks. I’m going to make a list of specific prayer requests that David and I have, and I’ll post that later.
David and I are going to give Brielle the best weekend we can. Right now David is making one of her favorite meals, pineapple, red pepper, chicken stir fry. She’ll be a very happy baby tonight. I’d appreciate any suggestions you may have on things we should do this weekend.
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.
We had an appointment on Friday and it was uneventful really. It was just a midwife appointment. My vitals and Brielle’s vitals all look great, Brielle is just as active as ever and we’re just waiting for Brielle to arrive. I did find it hilarious to note, I measure at 52 weeks. Which is a year, so I appear to be a year pregnant. A woman asked me the other day how many babies I was expecting. One, just one.
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.
lovingbrielle.com 