'Teen Mom 2': What's Wrong With Baby Ali's Eyes?

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Teen Mom 2 Leah's daughterI'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.

Madelyn before surgery
Madelyn before surgery
Then 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?

Madelyn after surgery
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

baby health, teen mom

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JodiC... JodiC1276

My 3 year old son was diagnosed with "double elevator palsy" in his left eye, which is another name for having limited movement in the eye.  Instead of turning inward, the eyeball doesn't move as well up and down and side to side as the other, causing him to look at you with his head cocked.  We too went see a PO once a year.  We did the patching, which helped to a point but he had his first eye surgery at 13 months then again at 20 months.  Doctor's normally don't want to do any type of surgery until the child is at least a year old so the anesthetic doesn't affect them.  Today he is doing much better but the PO said that when the eye grows again around 5 years old, he could need another surgery to loosen the muscles again.  I, too, initially chalked up his eye condition to that of being a baby and still growing.  Now I wish I would've gotten it diagnosed sooner.  Sam today is a healthy, active almost 4 year old and one would never guess he's already had 2 surgeries.  Leah needs to keep her head up and know that with modern medicine, it will get better! 

nonmember avatar jodie

My son was diagnosed with a Morning Glory Disc in both eyes, meaning that there is more tissue than nerve. He also has strabamis(sp?) and is now being patched. His IS due to a neurological problem though.

Amy Knoch

I was born legally blind because of this.  After 18 years of wearing glasses - no corrective surgery, my cousin had it as well, and his eye was damaged by the surgery (this was i the late 70s) so my mother refused surgery - I got up to almost perfect vision for several years.  I'm now 35, my vision is starting to deteriorate again, and depending on what I choose to do about it, I may or may not be legally blind within the next 10-15 years.  


It's not the end of the world.  It's fairly easy to live with all things considered.  

KBW2 KBW2

Bless them!!

Both Ali and Madelyn are adorable!

spira... spiralbelle19

My son has amblyopia and strabismus.  He luckily didn't need surgery but he is in bifocals and patches 4 hours a day.  He has been patching for almost 2 years and he is improving.  It is very hard but 100% worth it.  I am sorry for any families that have to deal with any health issues.  And my fingers are crossed for Ali and Madelyn.

Morgan Hall Williams

My 1 year old son was born with a condition called Optic Nerve Hypoplasia, and he is blind. He had nystagmus pretty bad when he was an infant, but it has improved very much with age. I rarely notice it anymore. I so know the feeling of "mourning" over pictures of before the diagnosis. We officially found out he was blind at about 4 months, so all the picture of him before that date seem like a different life. It sounds a little weird, but it is so true. Then, I wasn't the mother of a special needs child, I was just a mother to 3 typical children. With that being said, I wouldn't trade him for the world! He's my little monster and I love him more than life itself. :)

nonmember avatar gnd65

My son had strabismus (sp?) And was first noticed around 6 months old. His eye would just slightly go inward. So we saw his peditrician, they referred us to an eye doctor, which diagnosised him and referred him to UCLA director of optamology. We did the patching and glasses for 4-6 months. There wasn't any improvement, so surgery was the next option. It took 8 more months to get our insurance to cover the procedure but we just kept pressing until it was done. He was just over 2 yrs old when it was done. Once we were back home after the surgery, I remember holding him all night just to make sure he didn't touch his eyes or mess with the stitches. He healed pretty quickly and hasn't had an issue since. He is now 12 yrs old, his vision is 20/25, just about perfect and the eyes look perfect, like there was never a problem. I watched tonights teen mom episode, where leah and corey are in the hallway crying. I remember that feeling, that was us when our son was taken for surgery. Its hard but things can turn out fine, have faith and keep hope. Its funny that our son still remembers the surgery room with "bright lights" and a "gray balloon" that he had to blow up. He also says he had to drink "yucky juice". (Used to make him drowsy). I wish luck with anyone who has to go through these things with their kids.

nonmember avatar Alison

I don't have a child who patches, but a friend of mine does and she has started a business: http://eye-doodle.com that has decorative eye patches for kids that make patching a whole lot easier. Before she started the company, she would draw designs on her daughter's patches and it always started conversations, and received comments of "how cool."

nonmember avatar Jeanne

I have ocular albanism and nystagmus. I am 28 years old. I was diagnosed at only a few months old, they did multiple test and scans on me as a child to rule out any other brain disorders. As a child my mother worked with me on eye hand coordination. I have always had to sit at the front of the classroom and I tend to sit close to the TV, computer screen, or book. Since I don't know what normal vision is I have learned to adjust. My visition has gotten better as I have gotten older because I have learned to control my nerves and relax more. When I get nervouse, scared, etc. my eyes tend to move faster. I live a pretty normal life. I finished college with and engineering degree, I drive, I played basketball in high school. So parents should not be afraid of this diagnosis. My mom always encouraged me and not to let it hender me in what I wanted to accomplish.

magnu... magnus_pegasus

My eyes turned when I was very young, and I had (and still have) glasses.  My parents also tried patching my eye for a while.  It finally got to the point where nothing was working, so my parents turned to surgery.  I had the surgery to correct my eyes (both of them turned) when I was 15 months.

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