5 Things I Wish I’d Known When Choosing a High-Risk OB-GYN

I forgot my post about choosing a high-risk ob-gyn appeared on Preemie Babies 101 today…until I saw a belly in my Facebook newsfeed. I thought, “Hey, that kind of looks like my belly.” And then I realized it was.

Blogging about pregnancy and childbirth sure can be awkward sometimes.

Click here if you’re interested. In high-risk ob-gyns, not my belly in front of a Christmas tree. There I go feeling awkward again.

Glasses, And What They Mean

J had an appointment last week with a pediatric ophthalmologist. And he needs glasses. At age 4.

We are lucky. Extraordinarily lucky.

And I am vain.

But, you can’t help how you feel, can you? I know that I’ll roll the idea of his wearing glasses in my head like a pebble, until it’s worn smooth. I know I’ll adapt. He’ll adapt. We’ll all adapt.

Six weeks ago, I took the kids to visit their pediatrician one last time. We drove 4.5 hours and spent the night in a hotel three weeks after our move so that both kids could have one last check-up with the doctor who has shepherded us through these four years of bringing preemies home. It just so happens that our pediatrician has a portable machine that checks vision just by a child looking into it because she is in partnership with a major research hospital in testing the effectiveness of the equipment. The machine showed that J has amblyopia, or a lazy eye, and our doctor recommended we follow up with a specialist.

It turns out that J does have amblyopia, and his specific kind isn’t caused by any malformation of the eye. Both of his eyes are in perfect health. As his eyes have developed, his right eye has lagged behind his left eye; this is interesting to me because he’s always been so left-side dominant since his earliest days. Because his eyes developed so differently, a disparity formed between the vision in his two eyes, and his brain couldn’t handle two, separate signals. So, it began to shut off the signal to his weaker eye. His left eye sees perfectly.

Because I am nearsighted, I monitored his ability to see things at a distance. He can see a tiny bird high in the sky, with his strong eye. Most of his vision problems are with his ability to see close-up, which I never considered. And as time marched on, this slow, silent condition has robbed him of vision in an otherwise healthy eye; eventually, his right eye would become so weak that his brain would shut off the signal completely, rendering him blind. The damage is reversible in a toddler. Over time, the condition becomes more permanent as the brain becomes less malleable, which is why early detection is crucial.

I have seen how malleable a preemie’s brain is, so I am optimistic. I really believe J’s vision will correct itself over the next year. We have no idea if he will eventually strengthen his right eye enough to reclaim all his lost vision, and he may always need glasses. I’ve always thought it’s likely my kids will wear glasses by the time they are teenagers, since my astigmatism is hereditary, but I’ll admit there was a badge of honor in a preemie as early as Jay not having to wear glasses as a child.

We easily could have scheduled J’s check-up with our new pediatrician, who does not have access to such sophisticated equipment. And we easily could have missed J’s condition, because there are no outward warning signs. Our pediatric ophthalmologist said it’s very uncommon that a child with his specific condition is diagnosed so young.

So, if we’re so lucky, why did I feel so sad at the news?

Because despite all the risks and all the odds, J came out of the NICU unscathed. In a miraculous trouncing of fate, he thrived. He’s worked so hard, and we’ve worked so hard. But, despite whatever developmental delays he has overcome, on the outside he always looked like a perfectly healthy little boy. And in my vanity, I’m resisting accepting that he does have a vision problem and that prematurity and unusual brain development are likely contributing factors.

J is so reserved that I don’t want him hiding behind his glasses or viewing himself as different from other kids his age. But, that’s me putting my prejudices on a 4-year-old because his young friends probably won’t even notice his glasses. Most little kids really don’t care about things like that. So, I had an inward shaming last week when I fussed at myself for being vain and for being ungrateful. We could have received much worse news.

We have received worse news.

But, one of the reasons why I write is that it helps me understand my own complex emotions. I realize as I’m writing this that J’s glasses are also an outward reminder that as J grows, we could discover other conditions that may or may not be caused by prematurity. He’s at a higher risk for nearly everything, and I am able to block out those statistics because his health is usually so good.

I know my fear is universal because I am a mother, and parents always worry about their babies. No matter how big they get or how healthy they are, they’re always our babies. It’s not just that J needs glasses…and I’m not really that vain. My sadness has to do with the realization that this condition was silent and couldn’t be prevented through my vigilance.

Here’s my Public Service Message: please get your kids’ eyes checked regularly. J passed all the vision screens in the NICU, so we had no reason to suspect vision problems. Looking at a vision chart at a pediatrician’s office might be fine for most check-ups, if there’s no family history of vision problems, but I think all kids should receive a more in-depth vision screening at least by age 5. Poor eyesight can lead to all sorts of physical and mental delays, because kids don’t have proper coordination or the ability to complete tasks like reading. So, please don’t drop the ball on vision screenings, as I did!

12 Tips For Getting Synagis Injections Approved

My most recent article on Preemie Babies 101 posted yesterday. Here’s an excerpt:

©tiverylucky/freedigitalphotos.net

©tiverylucky/freedigitalphotos.net

Getting Synagis injections approved by insurance companies can be cumbersome, but for me the threat of my babies catching RSV was always worse. So, I stumbled my way through several Synagis approval scenarios. Hopefully, these tips can make your Synagis quest a little easier.

But first, it’s important to understand that there are general guidelines that exist to determine who gets Synagis injections. In the past, babies with a history of prematurity, lung or heart conditions, or extensive hospitalizations who were less than 6 months of age at the beginning of RSV season have been covered. Preemies born at 28 weeks or earlier who were less than one year old often qualified. Preemies or other babies with significant health concerns who were in high-risk situations, such as full-time daycare, exposure to other young children, or being a multiple, sometimes received Synagis injections up to age 2. At the time of this writing, changes to the guidelines are being discussed, so follow up with your pediatrician about whether your child qualifies.

  • Your pediatrician should be supportive of your quest to get Synagis. At a minimum, he or she should be willing to discuss Synagis as an option and why your child may or may not qualify. You are fighting an uphill battle if you have to fight your pediatrician in addition to the insurance company. If your doctor is unfamiliar with Synagis, that person might not be the best fit for a preemie who needs many special considerations in the first years.

Please click here to read more.