Smith-Levin Family: Max, Age 2, Bilateral Anophthalmia

Smith-Levin Family Video

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Transcript of Smith-Levin Family Video

Narrator 1: A photo of a mom, dad, and daughter all smiling at a toddler boy.

Jenny Smith: The happiest kid we've ever met. Right here, Mr. Happy.

Narrator 2: He is Max Smith-Levin, a two-year-old bundle of energy that brings joy to parents Jenny Smith and Alan Levin, and big sister Callie. Max has an extremely rare condition called bilateral anophthalmia, meaning he was born without eyes, only eyelids. The shattering news came to Jenny and Alan through a fetal MRI at 24 weeks of pregnancy.

Jenny: The radiologist said, "Let me show you film of a typically developing fetus the same age as yours." So right then, you know, I just burst into tears because they're not going to say that if there's not something drastically wrong.

Narrator 1: A photo of Jenny exposing her pregnant belly as Callie stands nearby.

Narrator 2: The Smith-Levin family says several doctors advocated for terminating Jenny's pregnancy, even at 24 weeks, given the potential challenges her child would face.

Jenny: It has to be a dialogue that you have with your spouse, so the conversation was had, but the conversation was short-lived, and we decided to go ahead with the pregnancy.

Narrator 1: Alan Levin.

Alan Levin: I look back on it, it was absolutely the right decision to make. I would never second-guess that decision ever, ever, ever.

Narrator 2: The Smith-Levins say having 16 weeks to prepare before Max's full term delivery allowed time to investigate resources.

Jenny: I had already made a lot of phone calls ahead of time, and the Department of Blind and Visual Impairment in the state of Virginia teases me that it's the youngest child they've ever had referred to them, because I called, you know, at 24 weeks gestation and said, "I'm going to have a baby who's going to be blind. I want services the day he's born; how can you help me?"

Narrator 1: Home video of Max pushing a wagon.

Jenny: Hi, happy boy.

Narrator 2: Because the Smith-Levins live in rural Virginia, services were available but limited. The family could not find a community preschool that would accept Max, so each morning his father commutes one hour to a school outside their community with Max.

Max can now walk independently behind a weighted push toy. Though he is still experiencing developmental delays, his parents say it's too soon to tell how far he'll progress.

Jenny: He's an awesome kid, but every parent, when you get pregnant and decide to have a baby, every parent has a picture and a dream in their mind of the child that they're going to have, and you have to put aside the child you didn't get and really love the child that you have. And it's not that it's worse or that it's a bad thing, it's just different.

Narrator 2: As a couple, Alan and Jenny react to Max differently. With her training in special education and her job as a teacher for the visually impaired, Jenny is highly focused on Max's developmental milestones.

Jenny: I'm always looking at what's the next step? What's the next service he needs; where do we need to get him to? I'm watching development that's not happening and thinking what do I need to do in his daily routine to facilitate that development.

Alan: Sometimes that's the overwhelming part for me. It's always "what's next?" I'm like, I just want to live now. What's Max going to have for dinner? That's what I like to think about. Or where are Max and I going tomorrow to play, not where he's going to college. I'm not ready to deal with those issues yet. We can deal with that when the time comes.

Narrator 1: Alan and Max in a swimming pool.

Narrator 2: Alan enjoys exposing Max to as many activities as possible. Whether it's swimming or sightseeing, he sees possibilities instead of limitations.

Narrator 1: Various photos of Max with his parents in outdoor settings.

Alan: I like to canoe and kayak so probably next year, hopefully, we'll get him in the boats and start doing some paddling once he can hold a paddle. I think that will be a great activity for him. Bike riding — he can do a tandem bike with us. Not much — I think it's everything that we enjoy, we hope he's going to enjoy with us.

Narrator 2: Max's adventurous personality fits in well with the Smiths' love of the outdoors, but the Smith-Levins know Max will face social challenges. Even a trip to the grocery store can result in unwelcome glances.

Alan: There's a couple days where I'm like, you know, stop staring at my child. I know he's a great looking kid, but it's just impolite. And again, I don't mind if the children stare, it's just they're inquisitive, that's a great quality for kids to have. But for parents, it's just rude.

Narrator 2: On the medical side, there are also insurance headaches. Jenny says getting their insurance company to cover Max's expensive conformers and prosthetic eyes is a constant struggle.

Jenny: It's still a battle. I still have to stay on top of it because they deny every claim, and then I have to call them up and remind them that they agreed to pay.

Narrator 2: The desire to share Max's challenges and accomplishments prompted Jenny and eight other moms to set up this web site, MAPS: Microphthamia Anophththalmia Parent Support. The response has been overwhelming.

Jenny: Within the first few days of being accessible on the web, we had parents contacting us from Australia, New Zealand, England, Canada, all saying wow, there are other people out there who have kids with anophthalmia and microphthalmia, and we thought we were the only ones.

Narrator 2: Through it all, the Smith-Levins have not lost their sense of humor.

Narrator 1: A photo of Max in a bumble bee costume. Another photo of a row of five prosthetic eyes of various shapes and sizes.

Narrator 2: Seems little Max sometimes considers his prosthetic eyes like toys that can be pulled out and dropped at will, like the time at the busy shopping mall.

Jenny: All of a sudden I heard this tink, tink, tink, and I looked down and saw the eye bouncing across the floor, and I dove for it and just took out a whole line of elderly women walking with their Christmas packages as I'm diving, because I'm just seeing dollar signs doing down the drain!

Narrator 2: The Smith-Levins remain positive about Max's future, but they understand he does face a long road.

Jenny: I think I have three wishes for him. The first is that he's free from pain; the second is that he's truly happy; and the third is that he has a true friend in life. And I can't advocate that, I can't make it happen, but I can try to raise the most competent child that I can to facilitate that.

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