u/amypauli

Looking for some perspective from parents of multiples, especially identical twins, who have dealt with one twin having medical issues or differences that the other doesn’t.
My identical twin girls are 9 months old, and Twin A was just diagnosed with Duane syndrome. For anyone unfamiliar with it, it’s a congenital eye movement disorder where one of the nerves controlling the eye doesn’t develop normally, so the affected eye has limited movement in certain directions. She has it in her left eye. Thankfully, her pediatric ophthalmologist said it’s not super severe and her head turn is minor, she compensates very well, and right now it seems like her vision is developing well. But her identical twin sister doesn’t have it.

I know logically that this isn’t something I caused, but I’m having a harder time with it emotionally than I expected because Twin A was also my baby who had to go to the NICU after they were born. She was only there for four days, which I know is incredibly short compared with what so many NICU families go through, but I still carry an immense amount of guilt about those four days. I was recovering from a C-section and also had Twin B with me, so Twin A was alone there more than I ever wanted her to be. Her dad and I were there as much as we possibly could be, but I still think about feedings I wasn’t there for and other tiny things that objectively probably don’t matter at all. Somehow they still kill me inside when I think about them.

And now she’s the twin with this diagnosis. I know those two things aren’t related, and I know my guilt isn’t rational. I just feel so sad that somehow my Twin A keeps being the one who has had to experience something her sister hasn’t.

I think what I’m most worried about now is the comparison that comes with being identical twins. They’re going to grow up looking so much alike, but one of them will have a left eye that can’t move to the left and may turn her head to compensate. They’re babies now, but what happens in middle school? High school? Adulthood?

I don’t want Twin A growing up feeling like she’s the twin with “something wrong with her,” while her sister is the one without it. I also don’t want us as parents to accidentally make her feel different by being overly protective or worried about her either :/

For parents whose twins/multiples grew up with one having a medical condition, physical difference, learning issue, developmental difference, disability, or really anything the other didn’t have, how did it actually affect them as they got older?

Did the affected twin compare themselves to their sibling? Did other kids compare them? Was there jealousy, resentment, protectiveness, insecurity? Did adolescence make it harder? And now that they’re older, how do they view their differences?

I’d especially love to hear from parents with older twins because right now I’m looking at two babies and trying not to project all of my fears about middle school, high school and adulthood onto them.
I think I just need to hear from parents who have already walked through this.

Hi everyone. My 9 mo daughter was just diagnosed with Duane syndrome affecting her left eye. She is an identical twin, and her twin sister does not appear to have it.

She has only a minor head turn, and we were told that the way she compensates is very good for her vision. We’re still waiting for the full encounter notes so I can understand her specific type and measurements better.

I think I’m struggling more emotionally with the diagnosis than anything else right now. I keep wondering how one identical twin can have this while the other doesn’t. I know it’s a sporadic mutation most of the time but still. 😭

I’m also nervous about the future as they grow up together. They’re identical girls, and I know people are inevitably going to compare them. I don’t ever want twin A to feel like there is something “wrong” with her because her sister’s eyes move differently, or become self conscious about her eye or the way she holds her head.

For those of you who have Duane syndrome, or parents of children with it: What was childhood actually like? Did you/your child become self conscious about it? Were other people able to notice it? Did the head turn or eye alignment change as you got older? Did it affect vision, sports, school, driving, or everyday life?

And if anyone has experience with Duane syndrome occurring in only one identical twin, I would especially love to hear from you.

I’m very new to all of this and would really appreciate hearing what life with Duane syndrome looks like beyond the medical descriptions.

Has anyone traveled internationally without their breastfed babies? Looking for advice!
I'm leaving for about a week for a wedding in Lake Como, then heading to Sardinia before flying back to the US. I'm leaving my 8-month-old twins at home, and I'm honestly really anxious. They get bottles of pumped milk during the day, but I breastfeed them every morning and throughout the night. I have an oversupply and currently have about 500 oz frozen, so they'll have plenty of milk while I'm gone.
My biggest worries are keeping my supply up while I'm away since l'll be exclusively pumping, figuring out how often I need to pump while traveling, sightseeing, at the wedding, on flights, etc., whether I should just pump and dump or try to bring the milk home, and what pump to bring!? AHHHH
Has anyone successfully brought breast milk back from Europe? If so, how did you do it? Did you use a cooler with ice packs, dry ice, Milk Stork, check it, carry it on? I will be flying from EWR to MXP then within Italy to Sardinia then finally oblia to JFK, so l'd love to hear what actually worked.
Also, did your babies go right back to nursing when you got home? That's another thing I'm worried about.
Any tips, packing recommendations, or things you wish you'd known before traveling would be so appreciated!