- Joined
- Feb 24, 2019
Part 1 : Woo Woo Mom and Birth Horror Story
Part 2 : Luna Deep Dive & Pics (You are Here)
Part 3 : Descent into Ultra Woo Part 1
Part 4 : Descent into Ultra Woo Part 2
Part 5 : Luna's Helmet Journey
Part 6 : Luna Vids, Resource Links & Overflow
Actual Picture Robyn Posted
One poster commented about the home birth that:
"Since she was in labor for three days there was obvious fetal distress and a competent midwife would have after 24 hours demanded she go to a hospital....So when a home birth starts being not fine, they ignore, and believe they are being heroic moms by sticking to squirting out a baby in a hot tub no matter what. The problem is a large majority of the women enamored with having a “home birth experience” have little common sense, they use woefully unprepared woo doulas and midwives that have little medical training. Everyone is more dedicated to avoiding the dreaded hospital birth than the health of the baby. A mother going to hospital the hospital is deemed a failure, not a precaution. (Also they don’t get their full fee if a doctor does the delivery and mothers get upset being stuck with an expensive hospital bill for a emergency delivery.)"
Glascgow Coma Scale with Modifications for Toddlers/Infants
"According to independent t-test, there is a statistically significant relationship between Glasgow Coma Scale and hydrocephalus (P=0.03)" Worse the hydrocephalus the lower the score the P means that there was a 99.97% this was NOT due to chance.
She shows reflexes also that should not exist at her age such as the Palmer grasp reflex which is what you see in very young infants that allows them to grasp your fingers if you touch the middle of their palm. At her age this is another clear indication of brain damage and usually means issues with the frontal lobe. She shows sunning, conjugate down gaze in the primary position, which is a sign of high intracranial pressure most commonly shown in patients with failed hydrocephalus shunts.
Due to lack of ability to close eyes it is hard to score her on that I don't believe we have ever seen her make meaningful eye contact.
Eye opening : 1
Motor Response : 3
Verbal Response : 2 (Anything videoed to show her agitated has been grunts and not normal crys for direct means)
Total : 6
Categorization:
Best Score : 15
Coma: No eye opening, no ability to follow commands, no word verbalizations ( 3 - 8 )
Unresponsive : 3 or below
Brain Injury Classification:
Minor Brain Injury----GCS score of 13 to 15
Moderate Brain Injury----GCS score of 9 to 12
Severe Brain Injury----GCS score of 3 to 8
Profound Brain Injury----GCS score of 3 or lower
Flowchart to Decide on Persistent Vegetative State (PVS) vs Minimally Conscious State (MCS)
Figure 1. Technical Info on CMS vs PVS Figure 2. Outcomes for PVS
The definition of Traumatic vs Non-Traumatic brain injury is a simple one. Traumatic involves an external force such as a car wreck or shaken baby syndrome. Whereas Non-traumatic is any injury that is internal such as drowning, hypoxia, aneurysms, brain tumors, etc.
As for Luna, she has a non-traumatic brain injury that wherein her persistive vegative state has lasted for over 6 months. Removing her disorder itself form the equation she would be 97% likely to remain in the PVS after a year and 3% to be severely disabled if she went into a MCS.
Types of Involuntary Movements/Seizures
| Abnormal movement | Definition | Pathophysiological origin |
|---|---|---|
| Chorea | Involuntary, purposeless, nonrhythmic, non-sustained movements that flow from one body part to the other | Poorly understood. Could be due to loss of normal pallidal inhibitory input |
| Hemiballismus: a severe form of chorea, is characterized by vigorous irregular high amplitude movements on one side of the body | Hemiballismus happens secondary to injury of the subthalamic nucleus | |
| Clonus | Rhythmic involuntary muscular contractions and relaxations | Upper motor neuron injury and its descending pathways |
| Dystonia | Sustained twisting movements that are often frequent and progresses to prolonged abnormal postures | Basal ganglia. Abnormalities are also seen in the cortex and reduction in spinal cord and brainstem inhibition |
| Myoclonus | Sudden, brief involuntary movements which may be caused by muscle contractions (positive myoclonus) | Widespread origin depending on the injury or type: cortical, subcortical (basal ganglia), brainstem or spinal cord in segmental myoclonus |
| Asterixis is considered a negative myoclonus secondary to sudden loss of tone | ||
| NCSE | Unilateral eye deviation, lip smacking, automatisms and some movements of the fingers | Cortical in origin |
| Paroxysmal posturing | Involuntary flexor or extensor posturing on one side or bilateral spontaneously or with pain. Opisthotonus posturing refers to hyperextension of the neck and back “arching position” | Damage above the red nucleus (flexion posturing) or below (extensor posturing) Midbrain injury or tetanus (opisthotonus) |
| Shivering | High frequency involuntary muscular contractions involving one group or more of muscles | Thermoregulatory (due to hypothermia) or non-thermoregulatory (not well understood) |
| Tics | Abnormal movements (motor) or sounds (phonic) which can be simple muscle jerks or complex when they consist of sequential movements in different parts of the body | May be related to abnormalities in the basal ganglia |
| Tremor | Oscillatory rhythmic movement that affects one or more parts of the body | Likely related to the presence of central oscillator in the basal ganglia or cerebellum |
Primer on Multicystic Encephalomalacia
Sonographic Recognition of Multicystic Encephalomalcia - Case Study
Figure 1 Gross findings of the central nervous system showing in A – Right lateral view of brain with a depression in the
parietal region with collapse of the meninges, B and C – Coronal slices of brain with multiple cystic spaces in central
white matter and extension onto the overlying cortex.
Differing brain slides from the disorder.
10 Month Old with same disorder
Primer on Hydrocephalus
Skeletons of Children with Severe Hydrocephalus (You can see they tend to blow out at the seams):
You can get an idea of the amount of skull deformity in cases as severe as Luna's here. The skull is just obliterated since it never has a chance for any fusions.Sonographic Recognition of Multicystic Encephalomalcia - Case Study
Figure 1 Gross findings of the central nervous system showing in A – Right lateral view of brain with a depression in the
parietal region with collapse of the meninges, B and C – Coronal slices of brain with multiple cystic spaces in central
white matter and extension onto the overlying cortex.
Differing brain slides from the disorder.
10 Month Old with same disorder
Primer on Hydrocephalus
Skeletons of Children with Severe Hydrocephalus (You can see they tend to blow out at the seams):
Cognitive ability may be effected and usually is, but not always. In these extreme cases it probably is, but you can even have normal pressure hydrocephalus in dementia patients. Sometimes it just totally pushes the skull plates apart as seen in this pic of Roona.
This is why they do head measurements and stuff, the normal well baby visits and check ups people like Luna's mother are against. Yet shes not against all the services she can get now. You really do not usually see children as bad off as Luna in the US because of all the prenatal testing we do. Mainly you see it now in Achondroplasic dwarfs since it's part of their diagnosis and it does not effect them cognitively.
The worst case of Hydrocephalus I have found was Roona Begum who died at 5 years old. This is what happens in 3rd world countries, due to lack of understanding of medical issues, lack of medical help or religious beliefs. This is here to put into perspective how wrong it is for a child like Luna to exist when ultrasounds and medical services could have changed her situation.
You can also see that with the fluid off she appears more alert then Luna ever has.
Her at 3:
Post-Surgery Pic:
After surgeries (She had 5 in total before she died):
She looked rather normal for a bit before it came back:
There are instrgram stories of the chiropractor doing things to her neck and spine as well as using "laser acupuncture." This is after they were told their daughter needed seizure and pain medication. It's hard to know what the medication situation was since she went back and forth on if she used it or not. It seems that as it happened she admitted to it, but then later on she acted like it was all crystals and angelic healing. It appears that once the shunt was put in they suddenly 100% believed she was cured and that her pain and seizures were gone.
The first warning sign things were wrong were that Luna never cried. They state that the only sounds she made were small noises. Even a casual conversation with a doctor would have led to this being looked into, but they did not believe in any wellness checks.
When asked about her vision and hearing she stated that Luna has never been able to close her eyes fully they just deemed this to her looking like a "funny alien" they do not believe she requires drops to keep her eyes moisturized. She states as a baby she slept with her eyes closed maybe 40% of the time and now she doesn't close them to sleep. She finds this as an amusing little quirk of her "Funny Alien Cyborg Girl." When asked about eyesight she said she saw perfectly find at 3 months old and a later check stated she was blind. She has yet to have it checked again, but states the doctors are all wrong and her eyesight is great.
She rages at the doctors stating this is all their fault while forgetting her own decisions lead to this. She believes prior doctors didn't think her life was worth saving because it was complicated and too much work. It also shows how out of touch with reality she is in the hope
of Luna recovering:
"All medical & genetic causes have been ruled out except a traumatic birth injury."
Some of the beliefs her mother has about food include:
Red colored foods are important to eat because red vibrates at about the same frequency as the root chakra. So, eating red foods helps to maintain the proper root chakra frequency. Yellow/tan/golden colored foods are important to eat because they help raise the body’s frequency to that of the solar plexus, helping to balance it. Purple pigments are important in food because they balance the third eye chakra while also protecting from spiritual overuse or negativity.
Most videos involve Luna actively seizing while they act like nothing wrong. There are videos of her having myclonic jerks, full body seizures, and absence seizures. It is clear her brain is screwed and they have removed her from medication to help with seizures because they state she doesn't have any and reiki heals all. Their earlier videos admitted to the seizure and pain, but they still only would use reiki and their "angelic healing" instead of making their daughter not suffer.
Luna had shunt surgery on April 30th, 2020. Her mother set up a distance reiki session of their followers to be done during her surgery and did multiple reiki sessions and spoke to angels to heal Luna before she went in. She refers to Luna having a shunt as being "a sickass cyborg girl like Cinder from Lunar Chronicles." She states that though the doctors say multicystic encephalomalacia is progressive, she does not believe it will be in Luna. The doctors also informed her this would not drain all her cysts. She later stated its magically drained them all. Her skull has already fused so any soft spots from this will never close on their own without surgery. Luna's mother believes that the brain has always been the normal size its just been squished and that the shunt causes her brain to now expand to normal size again.
Luna was discharged in 2 days. Shunt is not considered major surgery. By May 3rd she was taking her all over orange county in her stroller.
They were back home by May 8th/9th.
"Hydrocephalus can be treated with a shunt system, and this treatment often includes complications. An estimated 50% of shunts in the pediatric population fail within two years of placement and repeated neurosurgical operations are often required."
More info at: Complications of Shunt Systems
Helmet therapy was attempted wrongly by the mother. In helmet therapy a helmet is used to gentle shape the babies skull it is used for 23 hours a day with 1 hour for bathing, etc. The first week Luna's mother used it for 30 mins a day, then 40 mins, then 90 mins with breaks. When it broke Luna was never gotten another helmet. It was used incorrectly though and was a waste of a resource that people funded since she asked for money to purchase this stating medicare would not pay. Helmet lasted only 6 weeks. Supposedly has new one, but Luna has never been shown in it yet its supposed to be worn 23 hours a day.
Her mother has commented on her head:
"The fact that Luna's skull abnormalities took the shape of a beautiful heart speaks volumes to us. It's kind of like a representation of all the love we've poured into her, all the love that you all have gifted her with from afar and all the love she constantly gives back to us all. She's full love and light and soooooo much magic."
As stated by John Hopkins in a Q & A :
"Does my child need to wear the helmet all day?
"Yes. The idea behind the helmet is that it is worn 23 hours a day. It can be taken off during bathing. The rest of the time, your infant should constantly be in the helmet, whether playing, sleeping or feeding. This can be shocking to hear as a parent, as you think of your baby spending his or her formative months wearing a helmet. One thing we like to emphasize is that the helmet is usually not uncomfortable for the baby."
Luna's Head Circumference and Helmet Info
Shunt was put in when the head was 68 cm at a year old
Luna Pre Shunt
Shunt was put in when the head was 68 cm at a year old
Luna Pre Shunt
She was supposed to be wearing a helmet. It lasted 6 weeks and was used ENTIRELY inaccurately because mother had her own ideas on its usage.
Luna had G-Tube surgery in September of 2020. It appears Luna's only nutrition is her mother giving her breast milk through the Nasogastro Tube and now via the G-Tube. It was stated during this that they co-sleep with Luna and have all along. Post surgery as well she would climb into the hospital bed Luna was in. It's obvious by the way they did treatments on Luna the nurses knew she would never attempt to try to move much or to grab things. She is the one that places the feeding tube stating shes had to teach the nurses who come the right ways to do it since they do it wrong.
Many therapies are done for Luna which include OT and PT. She is working on being able to keep her head up on her own which without support her neck cannot support her head. She talks about getting speech therapy which some people confuse with just learning to speak. Speech therapists help in all oral areas and they appear to be working on getting her used to oral sensations as well as to assess if she is capable of swallowing, Luna's mouth is open most of the time now and the movements shown are not typical behaviors. Luna also appears incapable of closing her eyes this can be seen in more recent pictures which show that current swelling is still pulling her eyes out of shape. Her eyes also show weak muscle control. Luna's legs when shown seem to show foot drop which is a neurological sign usually seen in Cerebral Palsy which is also caused by hypoxia as well. Posters with knowledge on it said its an extreme case and it is due to atrophy of the tendons from lack of use of the foot and calf muscles. Her arms are kept in a position known as Posturing, decorticate to be exact, this is a clear sign of brain damage. It's quite possible she has apethoid cerebral palsy on top of the cyst issue due to the lack of oxygen.
Luna's movements are spastic in nature and mainly appear to be atypical, it's been noted she does not seem to cross midline which is a sensory issue. It's been noted by others that Luna does not track with her eyes at all there have been times flashing lights are been brought in and out of her field of view and she makes no movement to look at them. There have also been times when there are loud noises that should give a startle reflex that lead to no response, but this is much harder to assess via instragram. She is seen using a stander which is actually good, these types of things are not just to teach one to walk or stand, but to help with breathing and motility. She is also seen using some seating system which allow for extra support since she is unable to sit unassisted nor able to control head movement. The mother wants a rent or buy a hyperbaric oxygen chamber, as well.
Luna's movements are similar to some of the primitive responses you see in those with brain injury. You'll notice that her arms regardless of the situation always make the same movements and are held in the same positions. She, also, never moves her hands across midline.
It could be a form of posturing or its just an involuntary movement based on how bad her brain is.
More info on Posturing can be found at: Decerebrate And Decorticate Posturing
There was discussion that she had AFOs for wrists, both legs and her torso. The mother loved the idea of a cyborg child and kept comparing her to one. So all these orthopedics prove her hypotonia quite well. SPIO braces are used with spinal muscular atrophy and apethoid quadriplegia, both these disorders cause core weakness and issues with trunk control. Final video also shows she has weak muscle control of her eyes as well.
SPIO Info
Since standers and their usage/benefits is probably not what many people here run into. Here's a video using a child with Spinal Muscular Atrophy to explain how they benefit her, considering how immobile Luna is this seemed to be the best comparison.
Atlas Glenn Stanford Ramirez was born in February 2021 and they once again refused ultrasounds or blood work and worked with a "doula" doing a home water birth. She chose this woman because she would help her get past the trauma of Luna's birth with Reiki and energy healing so her new baby could be born healthy. She tells people on IG a perinatologist was involved but its obvious he was not and was never planned to be a part of the birth process. He appears at this time to be healthy and normal.
Luna's Journey - Posted 4/30/21 Instagram Video
Luna's Current Status
Click here for Part 3
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