I recently wrote about the Vision Center at Akron Children’s Hospital and pointed out that, no matter how excellent the Vision Center’s eye surgeons and optometrists are, the center abandons their patients in the last mile of care.
Glasses designed for the general population rarely fit patients with atypical facial anatomy. Compared to typical children, my daughter Lyra’s facial features are clustered closer together, the bridge of her nose is extremely flat and her ears are closer to her eyes. All of which is common in people with Down syndrome, which she has.
Frames exist for a variety of different facial structures, but few eye doctors carry those lines. That’s because, unlike the patient population at the Vision Center, most eye doctors have few patients who need specialized frames.
Akron Children’s Hospital takes all insurance, but most community eye doctors do not. Lyra’s primary insurance is Medicaid. Her secondary insurance, Children with Medical Handicaps (CMH), is provided by the state of Ohio but only for specific diagnoses. Lyra’s CMH covers her vision care, but because so few providers are approved by the state to accept CMH, and with no optical services at Akron Children’s, we’ve never been able to use it for glasses. (Ohio’s government does not consider Down syndrome a medical handicap and, therefore, care related to DS is not covered by CMH.)
Lyra began wearing glasses at age 3 when it became too difficult to change her contact lenses. Her first frames were by a company that no longer exists, Miraflex. They were designed for the small nose bridges of babies and young children, making them ideal for young children with DS.
We purchased them at Adolph Optical, a family-owned Akron business. Adolph Optical is a good option for many and they participate in programs that help un- and under-insured patients. They do not, however, take Lyra’s insurance, and her glasses are incredibly expensive. Her prescription is +22 diopters, which means her lenses are too thick for cheaper, but heavier, glass lenses. The thick lenses bulge out of the frames, making it easy for them to get scratched. The best anti-scratch coating is also the costliest. Finally, as most of us over the age of 45 well know, multifocal lenses cost much more than single-focus lenses. Lyra’s specialized bifocals typically take between six weeks and three months to make and cost over $500.
The Eye Site in Copley is the only local optometry practice I have found that takes Lyra’s Medicaid plan, Buckeye Community Health. Buckeye contributes a maximum of $130 per year for glasses. As a small provider, Eye Site has not been able to obtain state approval to accept CMH.
After months of searching, I found an optometry practice in Alliance that takes CMH and drove there with Lyra and her prescription to pick out frames. But when I arrived, I learned that the practice does not take Medicaid. A patient’s primary insurance must first be billed by the same provider before CMH will accept a claim.
After Lyra outgrew her Miraflex frames, I ordered a pair of frames online and took them to the Eye Site for lenses. But because her lenses are so heavy, they frequently popped out of the plastic frames, and one eventually broke. An optician who regularly works with high prescriptions would have steered me toward wire frames.
Wire frames usually have a screw holding the lenses tightly in place and nose pads that help accommodate tiny nose bridges — though Lyra’s glasses still slide halfway down her nose. I keep a jar of replacement nose pads because they frequently fall off and the spikes they are attached to cut into Lyra’s face.
I also have a jar of silicon sleeves for her frames’ temples. As the temples of most frames are too long for Lyra, I snip the ends with wire cutters and re-bend them to fit around her ears. The flat end of the temples, designed for comfort, are lost in the shortening process. The silicon sleeves help minimize pressure and protect her skin from the cut ends.
In response to my prior column, an ACH employee who works with the Vision Center’s patients sent an email that underscores ACH’s disconnect between excellent medical care and the functional application of treatment: “I have a difficult time understanding why you would not continue to make appointments with the remaining pediatric ophthalmologists at Akron Children’s Hospital and possibly travel elsewhere for optical services.”
They make it sound so simple.
Think of the families less fortunate than I with children who need specialized glasses. A single mom who may have to take off work and use public transportation to get to ACH. Once her child’s eyes have had excellent medical care at the Vision Center, she then has to figure out where to go to get glasses. What are the chances she’ll get them soon, if at all?
The practice nearest to ACH that offers optical services and accepts both Medicaid and CMH also has ophthalmologists who are just as excellent as those at ACH. That would be UH Rainbow Babies and Children’s in Cleveland.
We are fortunate to have a superb children’s hospital in Akron. But why would I get my daughter’s prescription at one hospital only to take it to another hospital for fulfillment when I can do everything in one location? Sadly, that one location is not Akron Children’s.
This was first published in the Akron Beacon Journal on Sunday, April 28, 2024.
Rainbow Babies and Children’s Hospital has it. Nationwide Children’s Hospital has it. Even Dayton Children’s Hospital has it. Akron Children’s Hospital, however, does not. What is lacking? An optical department in its Vision Center.
During my pregnancy with my now 11-year-old daughter, Lyra, non-invasive testing revealed nothing unusual. With eyes scrunched shut, Lyra cried loudly at the moment of her birth. I took her in my arms and when she opened her eyes, I saw what the testing had not. “Her eyes look Downsy and her pupils are milky white,” I said.
Dr. Richard Hertle and Lyra, who is wearing Miraflex frames, before an exam under general anesthesia at ACH in 2018.
The first weeks of Lyra’s life were a medical whirlwind. Children’s Hospital’s Genetic Center confirmed that Lyra has trisomy-21, the most common form of Down syndrome. That same week, Dr. Richard Hertle, an ophthalmologist at Akron Children’s Vision Center, diagnosed Lyra’s bilateral cataracts. Her lenses were surgically removed one at a time at ages six and seven weeks. Until Lyra’s diagnosis, I was unaware cataracts could occur congenitally. In the typical population, only one third of 1% of babies are born with cataracts. In the Down syndrome population it is 3%, also a small number.
Unlike cataract surgery for adults, synthetic intraocular lenses (IOLs) are not implanted just after a baby’s lensectomies. Eyeballs grow until age 20, with rapid growth occurring both immediately after birth and again at puberty. Furthermore, studies show that IOLs implanted before the age of 5 significantly increase a child’s chances of glaucoma.
I quickly came to trust Dr. Hertle. When asked details about the surgeries and eye anatomy, he became as animated as a kid at his own birthday party. During her two lensectomies, he installed scaffolding in her tiny eyeballs for the placement of IOLs, should she need or want them at a later date.
After her eyes had healed, Lyra wore contact lenses that when viewed in profile looked like alien space ships —discs with a sizable bulge in the middle. But as she got older (and stronger), changing Lyra’s lenses became difficult. I would hold Lyra tight while one Vision Center technician used a speculum to hold open her eyelids and a second technician changed the lenses.
When she was 3, we all agreed that changing Lyra’s contacts was too traumatizing and switched her to glasses. With no natural lenses, Lyra’s prescription is +22, and the lenses of her glasses are very thick. She wore Miraflex frames, a then widely available brand designed for the small nose bridges of babies and toddlers. They also work well for young children with Down syndrome, as they typically retain small nose bridges throughout life.
Miraflex is no longer an option. In 2020, the brand was acquired by the eye frame mega-conglomerate Essilor Luxotica Group, which promptly discontinued the line. Other brands, including Specs4Us and Erin’s World, also are designed for the unique facial features of people with Down syndrome. But it is a struggle for parents of children with a variety of special vision needs to find these, or other well-fitting, truly functional, frames.
And here’s why: Your local eye doctor does not have many patients with Down syndrome or other diagnoses that require specialized frames, so they are unlikely to carry them. Also, most optometry and ophthalmology practices do not accept Medicaid, which they must in order for a patient to use the Ohio Department of Health’s secondary state medical insurance, Children with Medical Handicaps (CMH). A pair of glasses for a child like Lyra can easily cost more than $500.
The Vision Center at Akron Children’s Hospital does their patients a gross disservice by not having an optical department. Unlike the offices of most eye doctors, the Vision Center’s patient population has an abundance of children who need specialized eyewear. And, like most children’s hospitals, Akron Children’s accepts Medicaid and CMH.
When I first wrote of this glaring optical oversight back in 2018, a team member of the Vision Center reached out to tell me that they would offer frames when they moved to their new location in the Considine Building in 2019. Yet as of today, the Vision Center still lacks optical care.
Lyra wore Miraflex frames for about four years. When she outgrew them, I began buying frames online and modifying them. Nose pads help keep the heavy lenses in front of her eyes, though it’s never as perfect as the frames designed for small nose bridges. And because the stems of frames designed for a typical child are too long for children with DS, I cut them with wire cutters, cover the sharp ends with silicone sleeves and re-bend them to fit around her ears.
On April 1, a letter from the Vision Center informed us that Dr. Hertle had retired two days earlier. Lyra has an army of support for her Down syndrome needs at school and through private therapies. But I have counted on Dr. Hertle alone for her medical eye care. I was shocked when I read the letter and momentarily felt panicked. However, change brings with it opportunities. I would never have left Dr. Hertle’s care. But as he’s no longer at Akron Children’s, we now will make the trek to Rainbow Babies and Children’s for truly comprehensive vision care.
This was published in the Akron Beacon Journal on Sunday, April 14, 2024.
Whoopsie Piggle can be found on “Down syndrome Blogs,” a site that aggregates Down syndrome blogs by category. One of the categories where Whoopsie Piggle is listed is “Dual Diagnosis” because Lyra was born with congenital cataracts in both of her eyes. Since her birth, the idea of my child being blind has been far more worrisome for me than her diagnosis of Down syndrome and while I hope this essay appeals to a variety of readers, I most wish to share what we have learned with parents of children who have both Down syndrome and vision impairment issues.
This past fall I finally gave up. And when I did, my relief surprised me.
“You know, even in kids without Down syndrome, somewhere between 18 months and four years old they typically stop tolerating contacts,” said Lyra’s ophthalmologist more than a year earlier when we started having problems keeping contacts in Lyra’s eyes. When she was a baby the same doctor had said that he would prefer to keep Lyra in contacts for as long as she tolerated them. The word “tolerate” when used in a medical setting sounds like a biological event over which there is little control, such as when organ transplants are tolerated or rejected by the recipient’s body. But in the case of contact lenses “tolerate” is a euphemism referring to behavior.
Lyra began wearing contact lenses when she was six weeks old. Because she was born with cataracts in both eyes, her natural lenses were surgically removed. Unlike when an adult has cataract surgery, however, synthetic lenses were not swapped in where the natural lenses had been removed. That’s because Lyra’s eyes continued to grow for at least another year after her surgeries. When her eyes were done growing, transplants were theoretically an option, which one of the younger doctors in the ophthalmology practice suggested.
“Young doctors love to operate,” said Lyra’s surgeon, who is the head of the practice, “but when you get older you recognize it is sometimes better to wait. Now if she comes to me at eighteen and says she wants implants, I’ll do them. But if she can do fine with contacts, it’s better to wait.” I agree for three important reasons: First of all, intraocular transplant surgeries in children under the age of five have far more complications, resulting in additional eye surgeries up to 72% of the time. Secondly, accurately determining what strength to give a surgically implanted lens on a child who is preliterate and unable to perform the typical acuity tests (Which one is clearer? A or B?) is never ideal, and, finally, I believe by the time Lyra is eighteen the field of intraocular lens transplantation will only have improved, perhaps significantly.
But back to tolerating contacts. The first two years Lyra wore them, I occasionally found one of her eyes nakedly free of any contact. Usually when this happened, the lens was ready to be replaced, which we did with the staff at the ophthalmologist’s office every three to four months. A new lens is shiny and clear, but over time protein accumulates, dulling the surface. I’m sure as they get dirtier, the contacts are less comfortable and I was not surprised when Lyra rubbed them out from time to time. This started happening more frequently after Lyra’s second birthday. Then this past spring, a few months before Lyra turned three, the pollen count rocketed higher than in most years. Lyra and everyone else in the house became sneezing snot buckets. Contacts disappeared weekly and at roughly $150 per lens, replacing them is not something to sneeze at. “It’s time,” said the doctor, “she’s spending too much time wearing only one lens and it’s too stressful putting new ones in this often.”
Two things in Lyra’s life have never been easy and have only gotten harder as she’s become bigger and stronger: quarterly blood draws to monitor her thyroid levels and contact lens changes. When she was a baby, I sat with Lyra on top of my legs with her head on my knees as one nurse put the speculum in her eye while the other one removed her old lens and put in a new one. The speculum was always necessary because Lyra clamped her little eyelids closed so tightly it was impossible to keep them open using fingers alone. When she was larger, I held Lyra sideways in my lap while one nurse held her head, another operated the speculum and a fourth nurse conducted the lens change. Always, Lyra screamed herself hoarse and became slippery with sweat. After doing this weekly for a month I lost all determination to keep her in contacts.
“Many kids love glasses and stay in them for years,” said the doctor when they removed her final contact lens. Even though there was only one lens to remove, afterwards Lyra remained upset and refused to wear her new glasses in the doctor’s office, wanting nobody and nothing near her eyes. I tried again later that day when we were home and she promptly pulled them off her head and flung them across the room. Now what? I fretted. She can’t go around with absolutely no correction. Her prescription is +19 in one eye and +20 in the other, qualifying her as legally blind (for comparison, I am quite nearsighted and my prescription is -3.75 and -4). I contacted the vision impairment specialist who used to come to our house with Lyra’s county caseworker. She sent me a list of tips for getting kids to wear their glasses, which assumed you could get them on the kid in the first place. I went to bed that night believing we might need implant surgery after all.
Lyra loves her glasses and kitties. This is inarguably her favorite shirt.
The next morning when I got up and went to the kitchen for coffee, Max was sitting at the table. “Look at Lyra,” he said. Because she sits at the end of the table, her back was toward me when I entered the kitchen. I came around and there she was, wearing her glasses while eating her breakfast. With the exception of the following day when she hid them in a pot inside the oven of her toy kitchen, Lyra has willingly worn her glasses ever since. In fact, when she gets up in the morning she often says, “Hi! I want axes.” Which is how she pronounces “glasses.”
Why was I so resistant to abandon contact lenses? What I told myself was that Lyra would not be able to see as well in glasses as she could in contacts. For anyone who has worn both glasses and contact lenses, it is often the case that contacts give a more precise, if not significant, correction. In part because the lens is directly on the eye and not a few centimeters away. But it was Max who hit on the larger reason. Max, who took Lyra’s diagnoses in stride since the very beginning and never grieved over Lyra’s Down syndrome because, as he told me, he just loves her so much as she is. That hasn’t changed, but with fierce love comes the desire to protect. “I wish she didn’t have to wear glasses because it’s one more thing that identifies her as different,” he said to me about a week after Lyra switched to glasses.
Though variation is substantial, people with Down syndrome, unlike other conditions, bear identifiable physical features. Chief among them are almond-shaped eyes due to epicanthal folds of the upper eyelids and flatter facial profiles. In the morning when she sits on my dresser in front of the mirror where I brush her long blonde hair, Lyra looks glamorous. But she cannot work with hair in her face and she cannot see without her glasses. Once her hair is smoothly secured in colorful elastic bands, I place her glasses over her head and around her neck like a necklace, then pull her hair over the safety band that connects the stems. Quickly Lyra grabs the frames and perfectly positions them on her face. “Hi!” she then says every time, looking me in the eyes.
Her glasses are so thick they feel almost like marbles when I rub them clean with soap and water, as I do many times a day. In contact lenses, Lyra often squinted, making her eyes look small. The magnification of her glasses is so powerful her eyes appear owlishly big, drawing attention to her face. Her vision impairment is now as patently obvious as her Down syndrome. More than before, in public people comment on how cute Lyra is. Like three-year-old boys in ties and sports coats, glasses on such a small girl looks endearingly adult. But what happens when Lyra is a teenager and, later, a woman? I have long felt more at ease with Lyra having Down syndrome than I do with her vision issues. And here’s why–Lyra is healthy, a social extrovert and very bright. Understanding that Down syndrome effects cognition, at three-and-a-half years old Lyra is no longer an enigma. She will do well in life with the right support, which we give her and will do so for as long as we can. Beyond us, Lyra is blessed with four adoring brothers whom I have no doubt will look out for their sister when Max and I are dead. (It happens and we don’t pussyfoot around in talking about it.) But my daughter as someone who is legally blind? What that means long term is not so clear.
In Ohio, services are provided at the home by the state, through the county of residence, until a child is three years old. Then the child is eligible for public preschool and it is there that services continue. Lyra is fortunate to have as her classroom teacher a vision impairment specialist. We have long heard that children with Down syndrome have strong visual memory but after raising two kids with severe dyslexia, I was not expecting Lyra to read before five as do many other children with Down syndrome, including our pediatrician’s daughter. Yet today Lyra recognizes and verbally identifies almost the entire alphabet, numbers one through nine, and at least five colors. For now, the letters and numbers she looks at are quite large, certainly not as small as the print in a typical children’s book, which leads to what comes next. When we recently saw Lyra’s ophthalmologist for the first time since her last contact lens was removed he was thrilled with her vision and said, “Somewhere between 12 and 18 months from now we will make the switch to bifocals. I want to wait a while because it’s a difficult transition, the kids fall a lot and it takes a while.” On the other hand, he also told me it would take two to three weeks for Lyra to adjust to glasses and that only took 24 hours.
Meanwhile, Lyra’s teacher is exposing her to braille and signed her up with a non-profit that sends us braille books every few months. The ones that are typical toddler books with clear braille stickers overlaid upon the text we keep at home. Others are simply white 8.5 x 11 pages covered with bumpy dots. We put those in Lyra’s backpack and send them to her teacher.
Like so many changes resisted in life due to fear of the unknown, I wish we had switched to glasses sooner than we did. We would have saved Lyra several traumatic contact lens changes. She still drops to the ground in an unfamiliar setting if she is unable to discern the topography of the ground or floor but otherwise seems to see as well as most other three year olds. An added benefit is her glasses have transition lenses, meaning they get dark when exposed to sunlight. In contacts, I could never get Lyra to “tolerate” sunglasses. Now sunglasses are just part of the package and she looks pretty cool.
Whoopsie Piggle 