Hospital to home
ROBIN SITTEN: A from the presentation so welcome to Perkins E-learning. Today is Thursday. Its January 16, 2020. This is our first live webinar event of the year, and we're glad you were able to join us. My name is Robin Sitten. I'm program manager for the Perkins E-learning Program. Today's presentation with Dr. Catherine Smyth, Hospital to Home, will begin in just a moment.
Perkins E-learning webinars are presented throughout the year on a monthly basis. Toward the end of 2019, we were able to share a three part recorded series on learning media assessments, which you can find on our website. At times, your own schedule may not allow you to attend live. So remember, you can view recorded webinars when it suits your schedule. And please, let your colleagues and families know that they can find this presentation on our website if they were not able to attend today.
The webinar series is just one of the offerings in our Professional Development program, which also includes publications, e-newsletters, podcasts, online and in-person classes, and self-based study. You can see our entire listings at our website, perkinselearning.org. Today's presentation will describe the Neonatal Assessment Visual European Grid, abbreviated, all caps, NAVEG, sometimes pronounced "nah-veg," a validated visual screening tool that indicates neurological risk in newborn infants.
To keep noise levels in control, we have muted your lines. You will be able to ask questions throughout the presentation, and we encourage you to post the questions as they occur to you. We'll address them at the end during Q&A. We are using this virtual meeting room for audio, so make sure your volume is on and turned up. You might find that external speakers or headphones give you the best audio.
Closed captioning is available through a link we are sharing in the chat window. We'll share a few more times during this introduction. Click the link to activate. Captioning considerations are provided by Texas Captioning.
You do have individual controls for your screen for both audio and video. Make your adjustments as you need to. Today's presentation includes a few videos. These videos are not formally described, but Dr. Smith will point out things for you to watch for in the recording. There is a lot of background noise, some infants vocalizing. A lot of the audio itself is not consequential to what she's describing. She'll describe that as she goes along.
In the recorded version, of course, you can certainly pause, rewind, and fast-forward as needed to get the most out of those videos. This event is being recorded. It will be available on the Perkins website, including the presentation, materials, and other resources.
We always appreciate your feedback and your topic suggestions. Please complete the survey when you receive it tomorrow to let us know how we can improve this program. It's now my pleasure to introduce today's speaker, Dr. Cathy Smyth, who is director of research at Anchor Center for Blind Children in Denver, Colorado and who's gotten up with us early today. So thank you very much.
She has an extensive background as a TSPI in early intervention providing support for families in center-based settings and homes. Her research interests include concept development and tactical assessments for young children with visual impairment, how vision loss affects the mealtime process and feeding, and early visual screening for infants, which she will discuss today.
Her professional goals include engaging TVIs in the research process and to provide feasible, successful, research-based interventions that we can all use with families in their natural settings. Thanks for joining us today, Cathy. I'm going to go to mute and turn the floor over to you.
CATHERINE SMYTHE: Hey. Thank you. Good morning. At least where I am, it's morning. So I know it's almost afternoon for some of you.
So I'm Dr. Catherine Smyth, and I'm director of research at Anchor Center for Blind Children in Denver, Colorado. I'm privileged to work with Dr. Robert King, a pediatric apthomologist who works in the local neonatal intensive care unit and two teachers of students with visual impairment on what we call the NAVEG Project.
And as already mentioned, the NAVEG Project uses the neonatal assessment, European vision, European Grid Screening with premature infants born at 31 and six, 7th weeks or less. And we do this screening at 35 to 40 weeks to evaluate the child's neurological status and the possible risk for a future neurological visual impairment. I'm very honored that Perkins has asked me to share what we know so far about the NAVEG Project and what the implications could be for future use.
So we have some learning objectives today. You will hopefully improve your knowledge of early visual development. You will recognize educational efforts to improve our relationships with hospital NICUs to conduct these early visual screenings. This is super important, that we have a good relationship with our local NICU.
We'll be updating you on the NAVEG Study results to change, possibly change. The standard of care in Neonatal Intensive Care Units in the future. And we will increase your awareness of how program interventions are applied to address neurological visual impairment needs during home visits and parent-to-parent group activities.
So Anchor Center for blind children teaches visually impaired infants, young children, and families, providing hope and a nurturing environment where children reach their highest potential. We work with early intervention professionals, in-home visits, and in our infant and toddler program. We have a preschool program as well that includes PT, OT, speech, music therapy, and family support services.
We also have the Eye Clinic. It's located within the building at Anchor Center for Blind Children for the family's convenience. And it provides ongoing diagnostic services such as glasses and surgery, if necessary. It also provides referrals for functional vision assessments that support families with an understanding of how their child sees in the environment of home and child care or the program.
This makes the Eye Clinic a part of the team at Anchor Center and supports a mutual understanding for both partners. The best part about it is the eye doctors that work there get to see the kids in a more functional environment with their families, and how they're using their vision. And it allows us TSVIs eyes to go to the eye appointments, which is very valuable.
So let's talk a little bit about early visual development. I've been TSVI for a very long time, over 30 years. And early in my career and even up until the last five years or so, I don't even think we would think to use this screening, that this would be possible. Screen babies under six months? Never.
Most early development charts indicate that vision is progressing around four months as we acquire more. But as we acquire more information about how the brain works and we have better imaging processes, we need to rethink this early visual development process. So what do we know?
This slide shows what we know from the science about how the different parts of the brain develop over time. It's from an important early brain science report from 2000, From Neurons to Neighborhood. So even 2000, that's 20 years ago already. How can that be?
This graph has three trajectories, one for the sensory pathways. That's the red one. One for the language and one for higher cognitive function of hearing the sensory pathways, is of hearing, vision, and tactual development. Please note that all three trajectories begin before birth. However, the sensory pathways are peaking at one month of age, one month.
Newborns are capable of so much more than we thought. There is scientific evidence that babies in utero show retinal movement, responses to simple faces and light. Some visual responses are not based on experience but are biologically primed. So the performance of premature babies on the NAVEG supports this evidence. That's one of the things that we are finding, that our babies are very capable, even at 35 to 40 weeks.
So there is no doubt that an infant's neurological state can affect their visual performance. TSVIs who assess young infants should have a good observational knowledge of these six state infant behaviors. So the first three, Quiet Sleep, Active Sleep, and Drowsy are not optimal for visual screening.
We work very closely with the staff, the NICU nursing staff, to schedule around feeding times and nap times so that we can screen the babies at their optimal state behavior. And that would be what we want, is them to be in that quiet alert mode. It's the best time to conduct the NAVEG screening.
Their eyes are wide and bright, they have limited body movement, and they're attentive. When the baby starts to move to Active Alert, it may mean that it's time to wrap that assessment or that item up, because you're losing them. Once they're crying, your responses will definitely be inconsistent.
So because of what we know about brain science and the capabilities of newborn and visual development, this research is starting to be possible. And so our concerns in the field. So the average identification of visual impairment is around 12 to 18 months at that time. And that's lost time. If we don't get those babies earlier, we could be helping families be more aware about their visual development.
Current standard of care in the NICU from a visual perspective is really only for retinopathy of prematurity. Many other visual diagnoses are missed. Prematurity is one of the diagnoses that puts a jolt at neurological risk visually. The earlier that we can make referrals to early intervention, the earlier we can help families become aware of their child's functional vision.
So the NAVEG has several benefits. It's already been validated as a visual screening tool on premature infants in Italy. It has three sections to cover all areas of visual screening. It's non-invasive, it is not a medical procedure, it does not stress the babies if you do it correctly, and it's easy to train screeners.
So let's do a-- talk a little bit about the history of the NAVEG quickly. The use of this screening is possible because, as I've mentioned, now we have a better understanding of visual development. Dr. King decided to use the NAVEG because of the following validation study.
In 2011 to 2014 in the Department of Neonatology and NICU in Brescia, Italy, the sample in included 80 infants born at or below 34 weeks and 80 infants born at 40 weeks. It was found to be soon sufficiently sensitive to identify what we call neurological risk. And our goal is to identify infants who need early intervention. So we don't have enough where we are in our study right now to make that claim, but it certainly is moving that direction.
Now, before we do anything else, let's talk about working with the NICU. Because as we've completed this project, we've learned so much more. The NAVEG Project would not be possible if we did not have access to the NICU at Rocky Mountain Hospital for Children through Dr. King. It's been a terrific opportunity for us to work together. It's also been a learning experience, I think, on both sides.
So some suggestions for educational efforts for four projects success include working with your local pediatric ophthalmologist. Dr. King opens doors and educational opportunities on both sides of this project. He's convinced the NICU staff and neonatologists that it's beneficial to families to identify that risk of neurological visual impairment early. We were able to submit to an institutional review board at the hospital to ensure ethical practices, and I cannot encourage you strongly enough to work with your local pediatric ophthalmologist.
Then, once you're in, you need to connect with that NICU staff and collaborate. NICU staff are busy caring for babies and working towards sending them home with their parents. Our NAVEG teams have received training from the NICU staff about their philosophy, learned protocols. And the importance of not interfering in other care, such as feedings and sleep.
So anything that can postpone the baby going home, we don't want to interfere with that. We've had the opportunity to develop a working relationship to acquire informed consents from parents and schedule weekly screenings. We have demonstrated that the NAVEG screening for the NICU staff and stressed our knowledge of visual skills. We've created a red flag document for the follow-up clinics to make early referrals of children to Anchor Center for functional vision assessments and early intervention services. So on all sides, this is benefiting.
Physical states of the baby are, as we've already discussed, are critical for success, and we cannot always complete the screening. So sometimes you will go in, and a baby's just not ready, so we frequently come back to do the NAVEG more than once. We have five weeks between that 35 week and that 40 week time period to come back and see those babies, unless they send them home early, which is a good thing for them. Maybe not for us, but for them.
So the current-- here's what our current NAVEG study looks like. So infants are identified through those. We talked about the current-- what visual care in the NICU is based on now, and it's those retinopathy of prematurity checks. So actually, well, the infants are identified for us through those are ROP lists at 31 and 7/8 weeks.
We are given two weeks to obtain parental informed consent, and our IRB is approved to include 100 infants. So we're really trying to have the parents there when we do it, and we talk, and have them sign the informed consent. So I did provide the score sheet for the NAVEG, so I hope you have access to that.
But the way it is set up is each item has a score of either zero, one, or two. So zero means there was a healthy child response. They responded right away, we saw what we needed to see. Number one is an incomplete response. So think about, maybe there's just a response in one eye or it's not a-- they can do in one direction, but not the other. And two is an atypical response and definitely, the child's at risk in that area.
So a total score of six and over indicates significant neurological risk a visual impairment and results in a referral to the ophthalmologist care and Anchor Center to look at their functional vision. So we, at this point, we are making follow-up calls at one year to find out the visual status of the child. So maybe when we did the NAVEG the NICU they passed and we're fine, and then later on in the year, we want to know did they end up with some kind of visual diagnosis? Are they still being followed by the ophthalmologist.
OK. So in order to give you more information about the case studies for this presentation, I wanted to share videos you, but please understand that we cannot take video in the NICU. We just are not allowed. So as much as I would love to show you a 37-week-old baby completing the NAVEG, we're just not allowed.
So we've chosen two children in the eye clinic at Anchor Center. One is 9 months and one just a year, so you can see how the NAVEG is administered. And those two children are Felicity and Titus, and they both have a diagnosis of hydrecephalus. Titus also has heminagoencephaly and has had a hemispherectomy for seizures.
And so on the screen, at three months, Felicity had a NAVEG screening of 10. And nine months, where you're going to see her today on the videos, it's six. And she receives home visits from us, as does Titus, who at six months had a NAVEG screening of 15.
And at 12 months, he has a NAVEG screening of four. So that means he's under the six. However, he does already have a diagnosis of CVI. And we are looking at him on the CVI range. He has a range of six to seven.
So what we're trying to figure out with the older children is, is the now the NAVEG appropriate? So it's been validated on newborns. It's not validated for older than that. So that's one of the things we're looking at. But in order to show you videos today, I needed to show you these older children.
OK. So this is the NAVEG kit that we-- you can see, it's portable. We have it in the cart, and it allows us to take each baby's-- to each baby's individual room in the NICU as well as having it available at the eye clinic. There's some specialized items that we'll talk about, but most are easily accessible. Some are hand made and, I think, flexible.
The NAVEG is made up of three components, the ocular-visual components, motor visual, and perceptual visual components. So the ocular visual components include the pupillary light reflex, the red reflex, eye abnormalities, and fundus abnormalities. So let's go to the pupillary reflex and red reflex, we would do is we would do in any vision screening.
So we use an ophthalmoscope and obviously, when we do pupillary reflex on a newborn, we do not put the flashlight right in their eyes. We put it on their forehead head or to the side to see if they're responding. And it is done like any other. And we're also-- we use an ophthalmoscope to look for red reflex.
So in this, a normal would give a student on the NAVEG a zero, OK? So a normal response. We see the red reflex in both eyes. If we see an unequal refraction, it would be-- or something just in one eye, we would give them a one. And if they have a cataract, it would be a two for sure. OK.
So one of the things that we know is that we just do an observational check as you would do in any functional vision assessment. And it might help us identify children who have an ocular issue early as well. So if there is a cataract or something or a coloboma, as you see here, we will see the eye abnormalities. They're identified through observation. It should be easy to recognize whether it's coloboma or poor symmetry. It should be noted on the score sheet.
Other differences to note would be the size of the eye. So is there a micropthalmia or structural changes, such as a drooping lid or a ptosis, or the absence of a structure like aniridia? Scoring would be a zero if everything looks typical, a one if the difference is in one eye only, and a two if both eyes are affected.
So fundus and abnormalities include what's been discovered from the ROP check. We always ask for the report, The ROP check reports for the nurse to score this part and indicate what the results show. Do all babies with ROP fail the screening? Surprisingly, no.
So the results of the ROP check may influence the score. So we take it into consideration, but it may not affect how they perform on the NAVEG at all, which is interesting. Something to think about.
The motor isual components, these NAVEG components include observation as well as performance items. So we look for fixation, smooth pursuit, saccadic movements, so looking back and forth. Sunsetting, nystagmus. Hope I can say this. Paroxysmal Deviation. I think that's right. Strabismus. So all of these things are included in the motor visual component.
Most TSVIs are already familiar with looking at these eye movements. OK? So these are already things that we're taking a look at. Sunsetting, as you can see in the photo here, is common with hydrocephalus. And nystagmus and strabismus can be evidence of neurological conditions. Paroxymal deviation is where the eyes are stuck in an upward gaze.
And again, scoring would be a zero if everything looks typical, a 1 if the difference is in one eye only, or 2 if both eyes are affected. We rarely see a 1 here, unless it's a strabismus. But we can, so it's great to be able to be looking for these cues right away. I think often we have babies who may have sunsetting or nystagmus in the NICU, because they have hydrocephalus, or they've had a bleed and it's already affecting their vision.
But because the standard of care is to look at ROP only, often the eye doctor does not have an opportunity to catch this. And I think this is something that Dr. King really took away from starting to do this assessment in the NICU. So this appealing little face on the screen here is Heidi, and we use Heidi for a variety of items on the NAVEG including fixation, pursuit and saccades.
So what you see here are the paddles. We also have contest sensitivity cards using Heidi, that I will show you in a video later. Often, newborns will demonstrate fixation for us by looking at their mother's face. So we may come in and the mother may be holding the baby, and we may say right away, does the baby look at you? And the baby demonstrates it right away. So we rarely have to pull out the paddles for fixation, but that's something to talk about.
Sometimes when we have to work harder to get the baby to respond, we may use Heidi or the red, yellow, and black-and-white striped fuzzy objects that we have. And that's what we have, but you don't have to. You can use red plastic balls, yellow plastic balls-- any item that's large enough to get the infant's attention, and are those different colors. So fixation is attending to a static object, pursuit is following an object at eye level to another position, and saccades is looking from one static object to another.
In the next slide we're going to have Felicity show us how it's done. She can show you far easier than I can ever explain. And just a quick note-- on some of these videos the sound may be very quiet. It's really not critical that you can hear what the NAVEG administer is doing, and I will explain things. So here is Felicity, and in this video, you will see Felicity attend to the screener's face. She reaches for her and smiles. This confirms for us that she has a central fixation.
In the NICU, we often ask caregivers to demonstrate if the baby looks at them. Sometimes we need to use higher contrast or the color objects, but most of the babies in the NICU that we screen, attend to a face. So let me try the video here.
SCREENER: Hi. Hello, my friend! Hello there! Are you giving me some good eye contact? You gonna touch my face? Yes, you are!
DOCTOR: And so you can say fixation.
SCREENER: Definitely. She's looking right at my face. So we definitely have central fixation.
CATHERINE SMYTH: So I don't think that needs a whole lot of explanation. So she attended to those screener's face, reached for the screener's face, and smiled. So there is no question she would get a zero on fixation, because she has that skill. All right. Let's see. I think I have to-- there we go. OK. So here's the next one. We have saccades. And in this one, you're going to see that the screener holds up targets at Felicity's eye level.
So I want to point this out to you. Felicity does this almost immediately. She immediately looks from one to the other. Her head turns from left to right, and then the screener gives her some wait time to see if she does it again, and she does. Something to watch for though is that you will see that the screener wiggles the balls and moves one in closely. Ideally, we would not want to do that, because the movement would cause the baby to look towards the ball, not towards that target.
So technically, we want them to be still. But you'll see she did it almost right away. That's the beauty of having video, is we can go back and watch the videos, and go, oh, look! They did it right away. She did it right away. Even though we might not have seen it when we were doing the screening. There we go. Lacrosse balls.
SCREENER: So I'm holding these up, and we are testing her saccades. We're wondering if she can look from one object to the other.
CATHERINE SMYTH: So there. She did it. Right there. That was it.
SCREENER: First of all, let her find one of them. Can we hold her back a little bit, toward you? Thank you. Look what I've got here.
CATHERINE SMYTH: Sometimes the newborns are easier, because they're not so wiggly.
SCREENER: There we go.
CATHERINE SMYTH: So there she does it again.
SCREENER: [INAUDIBLE].
CATHERINE SMYTH: And what we used for this particular screening is, they really are, they're lacrosse balls with black Xs, with marker-- made with dark marker on them. That's what the original study used, and that's what we used, and it works perfectly. So OK. So then we can move on to the perceptual components, and these include contrast sensitivity, visual acuity, visual field, and optokinetic nystagmus.
So first, we have contrast sensitivity. And again, these are the Heidi cards. This slide shows the blank card, the darkest card with 100% contrast, and the card in the front on the bottom has 25% contrast. A typical response would be to respond to the cards at both levels. So we would want them to respond to the 100% card and the 25% card.
We use two cards at a time. You put the blank card in the front, and you move the card that has the contrast out from behind in different directions, and see if the baby looks to those different responses. If we don't get a response, sometimes we adjust distance and get closer.
So for here we have Titus with his mom, and Titus is demonstrating what contrast sensitivity responses would look like at the 100% level. First, you'll see him look towards the right card, a clear choice, and then on the left. The screener has the face in the downward position, and this is a bit challenging for him. Remember, this child had a hemispherectomy and we do not see a clear response. And then yes for looking upwards, although it takes time. So even though he does pass at this level. He does not pass at the 25% level. So he would receive a 1 on this item. So let's see Titus here.
DOCTOR: And we're looking for how his peripheral vision is doing. So that's what we're doing.
MOM: OK.
CATHERINE SMYTH: Here we go. There is our choice to the right.
[INTERPOSING VOICES]
You'll see on the screen-- or on the score sheet, we have right, left, up, and down, so that we keep track of whether they get all four directions.
SCREENER: She moved it to his right. A little harder to get [INAUDIBLE]. So I'm also giving him fixation on this face figure. Because we can do fixation on three different things-- human face, face figure or bull's eye. So I'm giving him the face figure.
CATHERINE SMYTH: So there is the upward.
DOCTOR: What did he do there, Kelly?
CATHERINE SMYTH: So you have to pay attention. I will tell you, though, that the babies in the NICU, if they get this, they either get it or they don't. It's either a very clear response or it's not. Usually, we don't have to wait this long for a response in the NICU. It's interesting and surprising. OK. Next one.
So visual acuity-- for this item, we either use the Leah paddle, the grading paddles, at the four cycles per centimeter, or the Teller acuity card at the 2270 level. When we use either of these, you need to understand that the human eye seeks pattern. So if the baby can see the stripes, their eyes will move involuntarily to that side. So it's a forced preferential looking test, but that's what we use to look at for a newborn.
At this time, Dr. King seems to prefer the Teller card, but the Leah paddles get the job done, and they are more portable and less expensive. So they seem to work just fine. We don't have any problems with that. So here's Titus again to show us how it's done. The screener's using the Teller card, which she holds at Titus' is eye level.
The screener demonstrates the distance for the mother, then flips the card so the stripes are on the left, shows the card with the stripes in the lower field, then upper, waits for the child to lift his head for the upper, then tries for the right again, which he is able to do. So remember, the human eye seeks pattern. The way the Teller card is set up is one side has nothing and the other side has the stripes. So if the baby can see the stripes, their eyes will go to that side.
SCREENER: Hey, mister. And we're measuring about an arm's length away.
MOM: Mm-hmm.
SCREENER: Yes, to the left. Are you watching?
MOM: Mm-hmm.
SCREENER: I got it to the left. Lower.
CATHERINE SMYTH: So this is the upper. There he goes. Lifts that head up.
SCREENER: And upper.
CATHERINE SMYTH: That's a clear response.
SCREENER: I would even see to his left. What do you think of that? Could you see?
MOM: [INAUDIBLE]
SCREENER: I mean his right. He first got it to his left, lower, upper--
CATHERINE SMYTH: So he was able to do that.
SCREENER: There it is.
CATHERINE SMYTH: And again, the babies in the NICU are often even more quick. So now we're going to move to visual fields. We use that very high tech equipment again, those lacrosse balls with dark Xs drawn on them with the marker. This test takes practice, because the hardest part is to not move them, and bring movement into the equation. So we'll see how Felicity does. The screener establishes central fixation, then we see Felicity look toward the ball on her right. Then she fusses a bit, needs some time to kind of pull it back together, but does turn to her left.
When the ball is placed in her lower field, she's able to locate it. It is harder to get her attention for the upper field. So the screener gets her face down low, gets her attention, and Felicity is not able to locate the ball in the upper field. So she would receive a 1 for visual fields.
SCREENER: Yes! OK, so now I'm going to use these lacrosse balls, and I'm going to use it to test her field. I'm going to wait till she has central fixation, and then I'm going to see if she can see. There's one in her right field.
DOCTOR: Now, we think that movement is different than actually static.
SCREENER: OK.
DOCTOR: So let's see what about static.
SCREENER: OK, I'll do that side again. There's the ball. See it over here?
CATHERINE SMYTH: It's so hard not to move it.
SCREENER: There it is. OK. Let's go back to this.
DOCTOR: And I would make a comment, Tammy, on the latency.
SCREENER: OK. So we're seeing a little bit of latency with everything that she is fixating on. It takes her just a couple of seconds sometimes, to find one that's being presented in front of her. I'm going to go down and find you, huh?
DOCTOR: Want to check that visual field.
SCREENER: OK.
DOCTOR: And make the point that we know that lower visual field deficits are consistent with CPI.
SCREENER: OK, I'm going to move it down here. So there is the lower field, right there. She's looking right at the X on the lacrosse ball. We're going to try to-- hi! Hi! Hey, where did you go?
[INTERPOSING VOICES]
Hi! You are looking at [INAUDIBLE]. Let's see if we can find the ball up high. Up high. [LAUGHS]
CATHERINE SMYTH: Nope. No. No up high. And she consistently misses that upper field in other assessments as well. OK, so the next one-- optokinetic nystagmus is one time when we want to see nystagmus. The optokinetic reflex is an involuntary eye movement-- a nystagmus that stabilizes retinal images in the presence of a relative motion between an observer and the environment.
So the original NAVEG validation felt it was too difficult, because they used what we call the giant OKN Drum. It really is a giant piece of apparatus, and so, it was just impossible with the babies in the NICU. We're able to continue to look at this because we have an app. There's one called OKN Strips or OKNDrum on the iPad, that replicates that OKN Drum, and it seems to work.
So here's a YouTube video that gives you an idea of what the app looks like with the babies. We present it horizontally, vertically, to the right, and to the left. In order score a zero, the baby must demonstrate nystagmus in all four directions. I'm just going to play this real brief. So that's what it looks like, and we also have it in red and black as well. So that is OKN. So here's Felicity. Oh, it doesn't want to go. Hang On. I think I have to turn it off. Hang on. There we go. So here's Felicity and her OKN response.
SCREENER: I'm watching to see if her eyes will--
CATHERINE SMYTH: Look at her eyes very closely.
SCREENER: This is when we want to see it. You like that, huh?
CATHERINE SMYTH: And there it is. Just a little bit, but it's there. They're subtle.
SCREENER: So that was to her right, and now I'm switching direction to her left. Yep.
CATHERINE SMYTH: That was closer. There we go.
SCREENER: She's definitely got it. It's a little bit intermittent, a little bit slow. Now, I will test vertically, going downward.
CATHERINE SMYTH: But you see with the iPad, and you can do it with your phone as well. You can get in there very close. There you go. That's a clear response.
SCREENER: Definitely there on the test screen. I see every time I do that, it goes the other way.
[LAUGHTER]
Problems. OK, there we go. Felicity, one more. This is going up.
CATHERINE SMYTH: She goes, I'd rather look at my hand.
SCREENER: [INAUDIBLE]
CATHERINE SMYTH: And there it is.
SCREENER: She's following it up, and then her eyes are coming down--
CATHERINE SMYTH: Very nice.
MOM: Great.
CATHERINE SMYTH: So she would definitely get a zero on that, because that's a clear response. No. Sorry. Too fast. OK, reflexes. The corneal reflex, also known as the blink reflex, is an involuntary blinking of the eyelids elicited by stimulation of the cornea by touching the forehead. It can result from any peripheral stimulus. We cannot improve this, but if it's present, it confirms some level of neurological vision. You'll see Felicity responds with a blink to both touch and threat to tear.
SCREENER: Now, I'm going to test her visual reflexes, to touch and threat. Boop!
CATHERINE SMYTH: Here's a blink.
SCREENER: Yes, she has typical reflexes to touch. And mom if you'll move your hand and her hand out of the way a little bit. Oh!
CATHERINE SMYTH: And she blinks there. Perfect. Exactly what we want.
SCREENER: And now I'm going to test--
CATHERINE SMYTH: OK, so real quickly. So far, what do we know on our NAVEG updates? This is just the beginning of this work. We've been doing it for about a year. We hope to have additional NICUs across the country looking at this information, because we will need to collect so many more NAVEG scores. So we're cleared for 100, we need 1,000. If you think your local NICU would like to participate, Dr. King and I are happy to speak to the staff, and we're available to provide training.
What else do we know? As I've been saying, babies are incredibly capable. Infants as young as 35 weeks and two days have completed the NAVEG with no problem. NAVEG does identify infants with neurological risk. CVI, maybe, maybe not. So we're still looking at that. We need many, many more scores and diagnoses to know that. So we've screened 53 infants up to this time, and seven of those 53 infants have been referred for follow up services. So those are seven babies that we would not have had until later. And we can help parents to improve functional vision.
All right. So next step for families is when a child receives a score of more than six on the NAVEG in the NICU, the first thing that happens is that there is a referral to early intervention vision services-- in our case, to Anchor Center through follow-up eye clinic-- to have a functional vision assessment, or an FVA with the TSVI. The FVA will be reviewing the child's medical history, interviewing the parents, and observing how the child uses their vision in typical environments.
And are they displaying any of the 10 characteristics of CVI from Dr. Roman Lansky as they get older? And as also as they get older, we'll be assessing using the CVI range. So the next step for us is we'll be using these assessments to individualize early intervention programming. The programming will include looking at family routines, and how we can address those specific CVI characteristics of that child, or the ocular needs of that child.
Currently, we're busy creating intervention strategy idea sheets, and monitoring systems to begin a randomized control trial over the next two years, to see what works to help families with children with neurological visual impairment. These idea sheets will focus on daily routines in the home, that are suggested for each of the 10 characteristics, and online resources and a community of support understanding visual concerns, and reminders to contribute the monitoring system.
Both groups will be assessed through the study to determine if the interventions are making a difference. We'll be looking to see if the NAVEG is appropriate to use up to age one. Dr. King is going to be integrating this into his follow-up ROP checks in the clinic. And what does the CVI range tell us at this age? We'll be taking a closer look at parenting interactions through our sessions by using an assessment called the Piccolo, which looks at parent interactions with their child.
And in addition, the intervention group parents will participate in some family advocacy groups to help them when they transition their child into preschool. Control group families will receive the same assessments as the intervention families, and will receive the same quality interventions that everyone already receives at Anchor Center. So that's what we're hoping to do next.
And I said, here's what's next. So we hope to complete our cohort of 100 children at Rocky Mountain Hospital for Children, collaborate in NICU follow-up clinics, test family-centered interventions supported by research, establish protocols for the birth to three population, and establish protocols for the preschool population. And look at that, I'm just a minute late. And that's the end. Thanks. And I'm happy to answer questions. Do we have questions?
ROBIN SITTEN: Yeah, sorry. I have two mute buttons and only one of them was open. Thank you, Valerie.
CATHERINE SMYTH: [INAUDIBLE]
ROBIN SITTEN: You're on your own! Please post your questions in the chat window, and then that way I can repeat them, and everyone can hear them, and they can be captioned, just as they occur to you. What states are you working in currently, Laurie asks.
CATHERINE SMYTH: Oh, just in Colorado at the moment. We've had some interest in Utah, but we haven't heard back. So I'm hoping that that will happen too, but at the moment just in Colorado.
ROBIN SITTEN: Thank you. And you mentioned the What's Next there. How far away from what's next do you feel like you are, and what would get you there?
CATHERINE SMYTH: Oh! I don't think we're far. I think that as we set this randomized control up, we are learning that it's complicated, and we want to make sure that we are doing it right. So one of the things we're hoping to do next month, is to start-- we're going to be doing the Piccolo with both groups. And the Piccolo is a test that will be looking at that parenting variable that we want to pull out.
Because if it's good parenting, that's going to affect whether it's the control group or the intervention group. So we're going to be integrating the Piccolo in the infant/toddler program right away, so that we can make sure that we're doing that smoothly and correctly, so that when we start doing the randomized control trial, it will be more consistent. And that we don't have to worry about how is that going, and we can just be worrying about the intervention makes sense.
ROBIN SITTEN: I know you're distracted by your kiddie. So if she has a question, I would be glad to have to repeat it.
CATHERINE SMYTH: I'm sorry! [LAUGHS]
ROBIN SITTEN: A couple of questions about contact. Some participants would like to know if you were able to share your contact information?
CATHERINE SMYTH: Oh, yes.
ROBIN SITTEN: And another one asks, are you interested in cooperating with NICU in Europe? Because they would like to exchange information.
CATHERINE SMYTH: Absolutely, please, please, please. Yes. So my contact information-- oh, I'm so sorry that I didn't put that on the slide.
ROBIN SITTEN: That's OK. I was going to paste it in, but if you could speak it, then at least it will get recorded, and and we can attach it.
CATHERINE SMYTH: It's C. Smyth. And that's "Smyth" with a "y." So C-S-M-Y-T-H @anchorcenter.org.
ROBIN SITTEN: Thank you, and Anchor's spelled A-N-C-H-O-R, and we will add that when we make the recorded page. Thanks for asking. Could you tell us again the name of the app with the vertical stripes that imitated the Drum.
CATHERINE SMYTH: There's two. One is called ONK Stripes, the other one is-- sorry. And one of them even has the ability to do the [INAUDIBLE] so you could see the baby-- Oh, ONKDrum is the other one.
ROBIN SITTEN: OK.
CATHERINE SMYTH: So you can even-- it has the technology to look at the baby's eye movements. We can't use that in the NICU, because we can't do video. But it would be great if we could.
ROBIN SITTEN: Could you describe just briefly what some of the major differences are in the assessment that you actually do in the NICU, as compared to the assessments that you were able to share with us today?
CATHERINE SMYTH: Well, I think the biggest difference probably is that we pretty much have to be faster. Because we can do wait time for an older baby, but in the NICU, if you miss it, you missed it, and you may not get them back again. So again, you have to be good at looking at those observational states.
Babies frequently in the NICU, we might get an item and then stop, and wait a minute or so, and let the mother cuddle the baby, or see if we can get that quiet alert state back so that we can get a better response. And again, sometimes we have to do it more than once, because we can't give out the items in one session.
ROBIN SITTEN: OK. Garrett is asking, is NAVEG strictly a screening tool, or could it also be used in place of a traditional FEE for a child of that young age?
CATHERINE SMYTH: So the validated tool is a screening tool.
ROBIN SITTEN: OK.
CATHERINE SMYTH: And so, I don't know the answer to that question yet. I think that's why we're trying to use it in the eye appointments up to one because certainly parts of the NAVEG are something that you would do in a typical functional vision assessment, so it would be great if we could use that as part for young babies, but the researcher in me says we can't say yes to that question, because it's not validated.
ROBIN SITTEN: OK, fair enough. And I guess this will be the last question, because everyone's asking a variation of this question, which is, what do we do from here? How can people help? How can they help you gain exposure? How can they start a similar program where they are?
CATHERINE SMYTH: So feel free to contact me. I'm happy to talk to you, and Dr. King is happy to connect. Certainly, you can have your medical professionals that you work, with your pediatric ophthalmologists that are in the NICU, they can go to Perkins and watch the webinar, right? So they'll get more information that way. I think it really is just connecting and letting people know.
The more babies, the more hospitals that we can connect with, the better data we're going to have. I think this is incredibly exciting, and I feel so privileged to be a part of it. When I see a 35-week old baby zoom through a NAVEG screening, it just blows me away. And it happens. All of them? No. But a good portion of them are doing it. So I think we need to just talk up that this is possible.
If you already have a good relationship with your local NICU and pediatric ophthalmologist. Like I said, Dr. King and I are happy to do a Zoom meeting with you and talk about the downsides. We're willing to share the IRB that we have at the hospital, and whatever. Contact me. We'll figure something out.
ROBIN SITTEN: That's fantastic. Thank you so much, and thank you all for participating. I know we've gone a little bit over time, so I am going to wrap us up. But as Dr. Smyth says, just share this information with others. The recording will be available shortly. There is a transcript, as well a score sheet that she described, and a recording of the presentation itself that you can share and help get the word out.
It's an important topic, and we really appreciate your time, all of us coming. We know you found this webinar to be informative, and we hope you will join us next month. Coming next month is an active-learning presentation with our partners at the Texas School for the Blind and Visually Impaired. We share the Active-Learning Space project with them, and they'll be sharing some of their information there as well.
So I just want to thank you all on behalf of our team, Valerie Welland, who runs the console here, myself, Dr. Mary Zatta, and thanks to you, Cathy, again, for joining us today. And we'll see you all soon.
CATHERINE SMYTH: Thank you.