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I'm starting to feel like I'll need some anti-anxiety meds if I keep watching Teen Mom 2. There's heartbreak everywhere you turn, and none so much as the story of Leah Messer and Corey Simms and their twin daughters, Ali and Alleah.
Leah is the mom who seems to be the most "with it" in terms of caring for her kids, but Ali's had nothing but health troubles from the get-go, and the family hasn't gotten a whole lot of answers. One of Ali's problems -- her vision -- was addressed on last week's show, but there are still a lot of questions that make the rest of us moms watching extra nervous. So The Stir turned to another mom in Leah's situation to find out what's ahead for the teen mom and what other moms need to know if they're in the same boat.
Danita Brooks is a stay-at-home mom of two and an old friend. I knew her youngest child, 18-month-old Madelyn, has the same diagnosis as baby Ali -- nystagmus, or rapid involuntary movements of the eyes, and strabismus, an inward turning of the eye often caused by nystagmus. Nystagmus affects about 1 in 3,000 people. About 50 percent of people with nystagmus also have strabismus.
How did Madelyn get diagnosed?
We can't really remember exactly when we first noticed, but from looking back at old videos, she was probably about 3 months old. Her eyes would move back and forth, but not all the time. Some family members pointed it out, but I just wrote it off as a "baby thing" because babies don't have good eyesight.
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Madelyn before surgeryThen at a playdate my friend asked me about it, and considering that her daughter is basically the same age as Madelyn, it woke me up to the fact that it wasn't normal. She was 5 months old at the time. I called the pediatrician's office to see if it could wait until her 6-month check-up, and was called back by a nurse telling us that the pediatrician wanted to see her that afternoon.
He diagnosed nystagmus and said that she would need to have an MRI to rule out a brain tumor. The pediatrician referred us to a neurologist and pediatric ophthalmologist (PO) and we saw both of them within a few days. The neurologist ruled out seizures. The PO gave the official "congenital nystagmus" diagnosis, and he referred us to a pediatric neuro-ophthalmologist to make sure there were no underlying conditions that he was missing.
How did it hit you as a mom? Leah was terrified that this was in Ali's brain.
Honestly, my initial concern was that she would be blind. It's pretty rare for nystagmus to be caused by the brain itself, and luckily I knew that by the time we saw the pediatrician. The possibility of a brain tumor was not even a place I could go to mentally, and thank goodness for us, it was only a matter of hours where there was even such a concern.
However, nystagmus does often coincide with other major eye conditions, so I worried about that. My husband and I are both engineers/computer geeks and I worried that she would never be able to use a computer or drive a car. It was absolutely devastating, especially since one of the first things we learned about congenital nystagmus is that it never goes away; it's a lifelong condition with no full cure. I would get teary-eyed watching videos of her from before the nystagmus began -- it was like mourning the loss of her "normal" eyes. Then it seemed like every time things calmed down, the next thing started.
What comes next for these kids?
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Madelyn five days after surgery
We finally found an acceptance of the nystagmus, but her eyes had started to turn in, and we had to start patching her eye 2 hours a day. Patching was tough because it brought about a lot of questions from strangers that I wasn't prepared to answer, and more annoying were the whispers behind my back. Patching finally became routine, and then she had to start wearing glasses. We got our hopes up with the glasses, but then came the part we had always dreaded and hoped to avoid ... it was time for surgery.
Any tips for Leah and Corey or for other parents who just got this diagnosis?
Nystagmus can be a devastating diagnosis, but you are not alone. What helped me a lot was finding ways to connect with other people in my situation and especially stories about adults who live with this condition. The American Nystagmus Network has a wonderful email discussion list that has been a great source of information.
Do you know anyone who's going through a similar situation?
Images via MTV; Danita Brooks
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