Your stories: Jack’s Journey with infant cataracts

Many thanks to Lindsay for sharing this story about her son Jack who has congenital cataracts.  She blogs about his story at Jack’s Journey.  -Ann Z

Jack was the picture of health for the first 2 months of his life.  He hit all of his milestones on time, if not early.  That’s why we were shocked to find out that he had developed congenital cataracts.  There was no history of it in either of our families, and we hadn’t even heard of it.  The pediatrician got us in with the pediatric opthamologist right away, and she quickly began to feel like part of the family.  I’ll never forget that first appointment.  I went alone with Jack thinking it was just another one of those “send ya to a specialist to cover ourselves” things by the pediatrician.  I was overwhelmed immediately when she started talking about surgeries, and glasses and eyedrops.  I felt like I had just been punched in the gut.  As Jack slept soundly in his carseat, I called my husband crying from the lobby, not able to comprehend what I had just been told.

The 10 days between finding out and his first surgery were the hardest 10 days of my life.  I felt so desperate to somehow make it go away.  I felt like it was somehow my fault, or that the surgery was going to change my little guy.  I was blessed with a strong support system and my husband and I had all of our parents there the morning we went to the hospital.  When we handed him over to the anasthesiologist, all we could do was pray that these people understood that they held our life in their hands.

He came through the surgery like a champ.  He was none too thrilled with the giant patch taped  to his head for the next 24 hours, and it took an army to make sure it didn’t come off.  My husband and I became experts at eyedrops and were so much more prepared for his second surgery 3 weeks later.  After that surgery, Jack was able to wear his glasses right away. When you saw how much better he saw, you knew that all that pain and hurt you felt the past month was worth it.

3 month old boy wearing glasses for congenital cataracts

Jack in his glasses

It’s amazing what people say when they see a 3 month old wearing glasses.  I’ll admit, I would probably take a second look if I saw him as well.  What hurt the most is that people thought I was putting them on him as an accessory or to look cute.  I had no problem explaining why he had to wear the glasses.  Jack is now wearing contact lenses in both eyes.  They are a stronger prescription (-20 and -26) and keeping glasses on a 3 month old is as difficult as you would think!

Looking back over the past 6 weeks, I am amazed at how scared we were.  Coming through it, you feel like you have grown a second backbone.  We are blessed to have such a wonderful little guy like Jack who was stronger than anyone.  He still faces lots of eyedrops, prescription changes and trips to the doctor.  He’ll go back in for surgery when he is about 5 years old to receive his permanent lenses.  (In children as young as he is, they have to remove the lens to get the cataracts, but cannot give him a replacement as his vision is still changing.)We are so thankful for our doctor and that people were put on this earth with talents and gifts like she has.  We have been inducted into the stresses of parenthood rather quickly (Jack is our first), but we survived and we’re better for it!

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22 responses to “Your stories: Jack’s Journey with infant cataracts

  1. Can I just say that Jack has to be one of THE CUTEST babies I have ever seen! I am sure this post will be such an encouragement to others who get a similar diagnosis.

    ~Shelly, Mom to 6 kiddos including two with glasses!

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  2. Hi

    I totally understand how you felt, as my little girl had a very similar diagnosis when she was only three. She developed a squint in one eye and I took her alog to the eye specialist without my husband, thinking she’d have to get glasses and have eye patching etc. I left the hospital that day in floods of tears, as I was told she needed her lenses removed and replaced by contact lenses. I couldnt take in what they were saing either and the thought of my little girl having to have sugery frightened the life out of me.

    She did have her surgery and recovered almost immediately, she has taken to contact lens wear extremely well, much better than me, when I first got contact lenses!

    She is a healthy little girl but has regular check ups at the eye hospital, she is very open about her contact lenses and tells anyone who will listen why she wears them,

    I too have had parents thinking I made her wear the instead of glasses for vanity reasons, but I always tell them the medical reason behind her wearing them.

    Iused to panic when she wasn’t with me or my husband incase her lenses came out, but her school have been wonderful and several of the teachers can all put them back in for her now.

    She is 7 years old now and can take the lenses ut no problem on her own. We’re now building up to letting her try to put them in herself.

    Very best wishes for you and your young son.

    Lynn (Scotland)

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  3. Your son is very strong man to go through the successful surgery… I feel for you and it is really a hit on us to see our kids suffering from anything. I have also a daughter who has astigmatism and at an age of 5 she has to wear eye glasses. I was also shocked about that news and until now I am still wondering how she come up with that situation. Good thing kids look good with eyeglasses.

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  4. I know what you mean about the strange comments! My 2 year old (who has growth problems and looks like a one year old) started wearing his glasses full time recently and everywhere we go I have people asking if they are “REAL” glasses. Then when I say yes they ask “Like prescription glasses??” Ugh. What do they expect me to say? No they’re a costume accessory? I thought they looked cute so I force him to wear them? People are so strange, my son is legally blind from his eye condition, but people are shocked that such a young child can wear glasses.

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  5. He is such a cutie!

    Our little guy wasn’t diagnosed until 11 months. Looking back in pics, we can see small cataracts when he was only a few months old (you know…now that we know there was something wrong). We never once thought there was a problem. He was meeting all of his milestones. It was a long week between diagnosis at the optometrist’s office & the appointment with the PO, and an even longer week between the PO appt & his first surgery. He got his contacts 3 days before his first birthday and watching him see the world clearly for the first times was an absolutely amazing experience.

    We’ve had to put up with so many negative comments about his contacts: “Babies aren’t supposed to wear contacts”; “Stop worrying about what he’ll look like & get him some glasses”…just overall stupid stuff from people who have no clue! It drives me nuts, but I know that we’re doing what’s right for him!

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  6. Lindsay,

    Your son is absolutely gorgeous! We have a very similiar story to yours. Its so good to hear other stories and the strength of the parents that are with the little tots. Our son was born with bilateral cataracts and was diagnosed at birth. He had his lenses removed at 6 weeks of age and cotinues to wear glasses. I understand the difficulty in cosntatnly putting the glasses on but i promise it does get better!!

    We tried contact lenses also but he is much happier in the glasses. The looks from people are funny, altough i dont even notice them anymore. Some people are so narrow minded! Our son is now 18 months and nothing is stopping him! He now has glaucoma but this is just another hurdle to cross.

    Thinking of you and look forward to more updates.

    Best of Luck xo

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  7. Pingback: Getting the word out « little four eyes·

  8. This was a great posting! Our first child was born on June 20th. He was diagnosed with bilateral congenial cataracts immediately as well as mild micrognathia (he gets that from me, his daddy). Then speculations went around syndromes and everything else a parent does not want to hear. Soon all other speculations were debunked. However, we still needed to get the cataracts taken care of. Both have now been removed (August 4 – right eye and August 11 – left eye). The eye drops were a pain to put in, but we too have now become experts, and the little guy takes them like a champ. We were told that he is eligible to have a permanent lens put in at about 2 1/2 or 3 years old. Until then, he will likely wear glasses. Our optometrist recommends the glasses and has steered us away from contacts. He stated that none of his patients have ever took the contacts. He is the cutest little guy, and the patch did attract even more attention and questions. I am sure the glasses will do the same. I am a typical wise crack, so I am already starting to come up with good one-liners to the barrage of questions we will get. Glad to hear others with similar stories. -Mike

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    • Hi Mike

      Just wanted to know how is your child now with glasses?
      We’re going to my son’s surgery on Fri. He also has bilateral cataracts
      I wanted to ask you also since you have bilateral cataracts, how’s your vision now?
      Do you still wear glasses or you have iol?

      Thanks,
      Sheryl

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      • I just turned 34 and was born with cataracts in both eyes…I wore bifocal glasses until about age 10 and then got fitted for contacts…I was diagnosed with glaucoma at that time…with contacts I see 20/30 in left eye and 20/40 in right. I can drive, though driving in the rain at night is tough. I recently had a son who has the same eye condition….

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        • Hi Darrell,
          How is your son now and what is his prescription on contact lens? What type of sports did you play when you were in elementary?

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        • Hi Sheryl.

          My son is now 3 and he continues to wear glasses. Not sure about his exact prescription but it is around +20…he is in preschool and is doing well. He is able to see letters and numbers as well as recognize cars and airplanes from a distance.

          My newborn son also was born with cateracts. He had surgery and was given contact lenses at one month old.

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  9. My son Lathan is 18 months old,he was born with congenital cataracts also,he is doing great now!he has had surgery to remove the cataracts when he was a few weeks old, just curious to see what the future holds I wish I had answers,any advice?

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  10. Our daughter was diagnosed at 5 days old with congenital cataracts. I too went alone to the doctor thinking it wasn’t going to be a big issue. She is now 4 months old and 3 surgeries later has contacts in both eyes and is developing very well. We have to keep sunglasses on her when she is in bright light but other than that she is doing great. Our little one has definetely been a strong fighter through out the entire process. We are just so thankful that everything is finally working out in her favor. It has been one of the hardest things I have ever gone through but knowing that it was for the betterment of our daughter helped keep me strong. I can relate to these posts directly.

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  11. Jack’s story has been a great inspiration to me and my Wife. My wife was also born with cataracts, and so was her father, so when our daughter was born we knew we had to check it, as it was a possibility. To our dismay it proved that our precious daughter was a 3rd generation born with it. even though my wife had IOLs we never really understood what cataracts are, or how the lenses work, but our new doctor explained it to us in detail. Our daughter’s surgeries are now done, and we will get her glasses/contacts in the next 2 weeks. if it were possible i would get despicable me “minion” glasses, but my wife will have nothing of it. lol. It would be great to hear how jack is doing or any of the other parents that have dealt with it, and whose precious ones are accustomed to the glasses/contacts, and how they are doing in school etc.

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  12. Thanks for sharing Jack’s story. We just found out this week that our son will need cateract surgery. This puts our mind at ease tremendously.

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  13. I live in the Caribbean on the beautiful island of Trinidad. When i was told by the doctor that my precious two month old baby boy have bi lateral cataracts i was devastated to say the least. I had never heard of cataracts in children. He Will have his first surgery in two weeks. I have done extensive research and feel confident with his medical team of doctors and pediatrician. Jack and others stories have also put me at ease. my son is a little fighter i know he Will be okay. Lisa.

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    • Welcome Amalisa! I’m so sorry to hear that you and your son are dealing with this, but you’re right, he is going to be ok. Best wishes and let us know how he’s doing.

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  14. My daughter is 10 days old and was diagnosed with cataracts today. I stumbled across this page while googling pediatric cataracts. I realize this blog was from 7 years ago but I’d love to talk to someone who has been through it! She goes in for surgery in August (she will be 3 months old)
    Your son is adorable by the way!

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