The same can be said of your local hospital.
Until 2012, I had only a handful of experiences at Akron Children’s Hospital.
When he was in the second grade, Jules was tested and diagnosed with dyslexia at ACH. One of their orthopedists confirmed Hugo’s mild scoliosis and told him he had nothing to worry about. And ACH’s sports medicine department diagnosed Claude’s Osgood Schlatter disease, an inflammation of growth plates at the end of the tibia common in athletes who are growing rapidly.
Lyra, however, is an ACH frequent flyer. This month alone she has 11 appointments.
On her second day of life, we met for the one and only time with Dr. Catherine Ward-Melver, a kind geneticist who confirmed Lyra’s diagnosis of Down syndrome.
On her third day of life, we met Lyra’s ophthalmologist, Dr. Richard Hertle, whom we’ve seen multiple times a year ever since. He has operated on each of her eyes two times.
When she was 5 months old, Lyra was diagnosed with hypothyroidism, a condition common in people with DS. Certified nurse practitioner Stephanie Marszal in the endocrinology department is also someone we see regularly. Our visits with her are like double dipping, for Marszal worked in a pediatrician’s office before specializing in endocrinology. She provides both an update on Lyra’s thyroid and an extra wellness visit.
In the second half of her first year, Lyra began the infant block of therapies offered at ACH. Physical, speech and occupational therapies in back-to-back half-hour appointments make effective use of everyone’s time. Children from birth to 3 years old are eligible with a qualifying diagnosis.
Speech therapist Shelly Vaughn had Lyra singing Itsy-Bitsy Spider at our first visit, leaving me slack-jawed. Heather Reiss, her occupational therapist, got Lyra to work, work, work on both fine and gross motor skills all while Lyra thought she was playing. When she aged out of the infant block, I cried because I had grown so close to these ladies.
These days, Lyra has four speech therapy and two occupational therapy appointments per month. When we pull into the parking lot, Lyra chirps eagerly from her car seat, “Lisa, Miss Margaret!” Still, I sit in on enough sessions to know they make our girl work. Recently Margaret Norin, Lyra’s OT, told me, “I wish just once my clients with DS would say ‘Yes!’ the first time I ask them to do something!” Oh, yes, I could not agree more.
With Down syndrome comes a cascade of tests to rule out various issues. Annually we visit Dr. Diane Langkamp in the Down syndrome clinic to make sure we are on top of these things. (Down syndrome clinics are overwhelmingly located in the northeastern U.S. and I do not take for granted that we have one in Akron.)
Last year, an ACH otolaryngologist (ear, nose and throat doctor) ordered a sleep study for Lyra. Kids with DS have a higher rate of sleep apnea due to certain anatomical features. Any child not getting enough sleep has an increased risk of developmental delays, and children with DS need fewer, not more, developmental obstacles.
Most people with DS not only have low muscle tone, they frequently have ligament laxity. One common effect is foot pronation — ankles tilting toward one another while the toes splay outwards, fin-like — so Lyra has worn braces on her feet since she began walking.
But ligament laxity also affects the cervical spine. An injury to the atlantoaxial joint, or the first and second cervical vertebrae, can lead to paralysis or worse. So on July 20, Lyra had a spinal MRI under general anesthesia to examine the joint.
This past Thursday, Lyra also had an eye exam under anesthesia. Were she a more “compliant” patient, this would not be necessary. But Lyra fights like an oiled otter when getting examined up close and personal. Dr. Hertle needed to determine her first bifocal prescription and also test her for glaucoma. Because of her congenital cataracts and subsequent lensectomies, Lyra has a higher risk of glaucoma than the average bear.
Dr. Hertle. If I could put heart emojis in my column, they’d be here. When I learned my newborn needed eye surgery ASAP, I called a friend in a related field and asked who was the best in Ohio. Doctors hate talking about which practitioners are better, but as a friend of more than 30 years, this doc made some calls for me.
We’d be hard pressed to find a better pediatric ophthalmologist. Gentle and effective with Lyra (remember: oiled otter), when asked questions about the eye and his surgical techniques Dr. Hertle lights up like a boy getting his first puppy.
I learn other things from him too. When Lyra was 9 months old, she suddenly seemed to “awaken.” Dr. Hertle explained to me that the nerves in children with Down syndrome myelinate later than in typical kids: “See that wire down there,” he said pointing to an outlet with a thick cord plugged into it. “Because it’s insulated, electricity can travel faster. The same is true of nerves when myelination has occurred.”
I know of only two things lacking at ACH: One, the food could be better. Across the country, hospital restaurants serve food that is healthy, delicious and affordable. ACH has made some baby steps (two thumbs up for the cafe in the Kay Pavilion) but there is still ample room for improvement.
Also, all departments, including the ER and the surgery centers, should have more than popsicles and graham crackers (Goldfish, please).
The second deficit is big for us: No optometry. Because of her vision impairment, Lyra qualifies for a state insurance program called BCMH (Bureau for Children with Medical Handicaps). It helps with her visits to Dr. Hertle, but ideally we’d be able to use it for her glasses, too.
Lyra has no lenses, natural or artificial, in her eyes. Her glasses are essential and expensive. In order to use the BCMH insurance, however, our primary insurance must get billed first. The only optometrist’s office in the northern half of Ohio that takes both our primary insurance and Lyra’s BCMH is at Nationwide Children’s Hospital in Columbus.
But these concerns are no more than a couple of cirrostratus clouds in a bright blue sky. Not a week goes by that I don’t thank the universe that it takes me less than 15 minutes to get Lyra to some of the top medical professionals in the country.
Not only is it an immeasurable convenience for Summit County residents, ACH has no shortage of business, or so Lyra’s neurologist told me recently. Which means ACH provides great medical care where it is greatly needed.
I know parents of children with Down syndrome who have moved to different states for better medical care. That decision is one we will never have to make. If ACH were an insurance company, we’ve filed just about every possible claim. And since the results typically exceed our expectations, we know firsthand how good it really is.
This was first published in the Akron Beacon Journal on Sunday, July 29, 2018.