Jacqueline & Isabella – Bilateral congenital cataracts, & glaucoma

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On June 15th 1990, my parents welcomed their third child and second baby girl into the world–ME! Little did they know, they were about to get the shock of their lifetime when the doctors told them that I was born with bilateral cataracts. They were so surprised because not only was I their third child, but my older siblings were perfectly healthy! My parents & doctors moved quickly, and my cataracts were removed at just one and two weeks old. They chose to put me in contacts, go them! I was one happy little girl, until around 9 months old when they noticed my right eye was cloudy. My pediatric ophthalmologist told them that I had developed glaucoma and needed to be treated right away! They were devastated all over again, but pressed forward and found an amazing team of doctors to care for me. According to my Mom & Dad, I’ve had at least 9 glaucoma surgeries on my left and right eyes all together (goniotomies, trabeculectomies, and even a valve placed!) In addition I also underwent at least 30 EUAs (Examinations Under Anesthesia) about every 6 months to check that everything was running smoothly. We lived in Southern California, but drove up to San Francisco to see my specialist- Dr. Andrew Iwach. He is an amazing man!! My last surgery was before I turned 10, and I’ve remained stable on medication ever since. For as long as I can remember, I have been on Alphagan, Cosopt, Travatan/Xalatan and oral Diamox. Unfortunately, either due to an underdeveloped optic nerve, or one that was damaged from the glaucoma, I have lost most vision in my right eye-resulting in amblyopia. I am still able to drive, I just work harder than most to make sure I am safe on the road!

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Growing up was hard. Since developing glaucoma, my parents were forced to keep me in glasses, which is what I wore until I was 17 years old. Kids were mean at school and not very understanding of a fellow classmate in such thick glasses- my prescription is around +12! I resented my glasses, but wore them because of course I wanted to see! I missed a lot of school due to surgeries, but I made it through. My parents were (and are!) very loving and worked as hard as they could to make sure I was happy and healthy!! Thankfully, when I turned 17, soft contacts lenses finally came out in a prescription strong enough for me- and man was I ever thrilled!! I am very self-conscious about being in glasses, so I continue to wear contacts full-time, except for at night when the contacts ‘have/ to clean..
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In school, I did pretty well for myself. I had an awesome tutor that came to see me at home when I had to be out for surgery as well as a visual aide at school that came to check on me to make sure I was getting the help I needed. I sometimes had papers enlarged, or took more time on tests, and even had a cool magnifying machine to make words really big and much easier to see! I had lots of friends (there’s always kids who can see past the glasses to what awesome people we are!) and my family had a lot of fun together.
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In March of 2008, I met the love of my life! We were married and welcomed a beautiful baby girl on November 2009. Isabella Grace was the light of our lives! My husband and I were in love and we enjoyed every second with our little princess. Life with a newborn was typical, and it wasn’t until about 2 months old that we realized she wasn’t focusing on things that she should and her eyes were shaking (what we later learned was nystagmus). Her pediatrician recommended we see a pediatric ophthalmologist right away.
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In February of 2010, we got the news that Isabella had bilateral cataracts- just like her mommy. We were shocked and devastated. Prior to my pregnancy, I was unaware of the 50/50 chance that I had of passing on my rare condition to any of my children (we now know it is referred to as autosomal dominant). On March 5th and March 12th, Isabella underwent surgery to have both of her cataracts removed. Waiting for your child in the waiting room while they are in the OR is one of the hardest things you have to do- especially when they are so young! Thankfully her surgeries went very smoothly and we saw an improvement immediately! She was reaching for toys and staring at us as soon as the patches came off- without even any correction from glasses! After a post op check, we went ahead and ordered Isabella ┬áher first pair of glasses (something we never thought we’d be doing for our 4 month old!). So at 4 months old, our little princess starting wearing the cutest pair of pink Miraflex frames (her prescription was +20 in both eyes). It took some getting used to to see her in the glasses, but we grew to love her in them, especially knowing that they helped her see!!
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She continued to thrive and grow into her own little personality and we loved her more than anything. Unfortunately in July of that year, she had to go back into surgery to remove a remnant of cataract that was left behind in her left eye. Her cataracts had been so dense that the doctor had to snip them into pieces to remove them that past March. She came through like a champ, but her prescription has been a bit higher in that eye ever since. After that, we went on living our lives as a family of three.
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My husband, Brenden, was in the Navy, so we spent the first 18 months of Isabella’s life in Waukegan, IL while he completed his schooling. While there, Isabella was seen by a local pediatric ophthalmologist, but underwent surgery at the Milwaukee Children’s Hospital in Wisconsin. We are thankful that military insurance has allowed us to be able to see some of the best doctors to provide the greatest care for Isabella as she grows. In early 2011, we made the move from Illinois to Gulfport, MS where my husband would work with the Seabees! Life was normal in MS and Isabella continued to be monitored and underwent annual EUAs to check prescription and pressures (to make sure there was no glaucoma). She was seen by Dr. Horatio Eustis at Ochsner Children’s Hospital in Louisiana- he was a brilliant doctor! We tried to put Isabella in contacts during our time in Mississippi, but Isabella proved to be too stubborn and it just did not work out! Dr. Eustis said he would be happy to place IOLs for Isabella, but we decided it was too early in her life to make that decision. When she is older- school age probably- we will try contacts again. We want to hold off on the IOLs for as long as possibly. Overall, we had a blast exploring new places, reminding ourselves how appreciative we were that Isabella was given the chance to see it as well.
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In December of 2012, almost two years after living in Mississippi, we were finally transferred back to California to the lovely city of San Diego! Isabella was quickly set up with a new PO so she could be followed through our time in San Diego. On March 12th 2013 she went in for an annual EUA, but this one did not give us the news we had hoped for. Isabella’s pressures had sky-rocketed, resulting in not only the diagnosis of glaucoma, but also moderate optic nerve damage in her right eye. Our hearts were broken all over again. She was immediately put on Cosopt to try and get the pressure under control and she was to be seen back a week later for another EUA to see if that drop was working. Unfortunately, the next week came and the pressures still weren’t down, so we added Xalatan nightly to see if that would help. The following week (yes that makes for 3 EUAs in a 3 week span) we were back in the OR for another EUA hoping that those two drops were doing the trick. The consensus was that they worked, but not well enough. We decided to put Isabella on oral Diamox- in a liquid form- to use as a stop gap before we saw a new pediatric ophthalmologist in the San Francisco area. The perks to having been through it myself before were that I knew who to turn to in terms of excellent doctors in the area! Dr. Iwach, who I used as a child no longer took pediatric patients, so he recommended Dr. Robert Stamper to us of UCSF. We now live in Alameda area for the next year, hoping that once Isabella is stabilized, we can head back down to San Diego.
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In April, we saw Dr. Stamper for the first time and he decided that it was time for Isabella to have her first surgery to get the pressure under control (we were so upset and slightly shocked that the drops and Diamox weren’t working!). She had a trabeculotomy and the surgery went wonderfully. Caring for a 3 year old after surgery was challenging, we were all in pain, both physically and emotionally, but we’ve all managed to heal up nicely! We went back on May 15th for a post op check under anesthesia to see how the surgery worked, and it did!! Pressures were both 19 (previously had been in the 20s and 30s). We were SO happy and grateful! Dr. Stamper was very pleased and said we did not need to come back until late August! We are also thankful to always have family there to help when we need them- they are one of our biggest support systems!
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We continue to be thankful for everyday we share together as a family. I am most thankful for modern technology and the amazing skills of doctors these days- they have given myself and my daughter a chance to see what life has to offer. Some days are a challenge and I feel like myself especially am in constant worry of what to come next, but we are trying not to let it get in our way. As of today, we have all had our challenges, but we can see and appreciate every day we have to do so. We are currently hoping for more medical advances in either research, genetics, and hopefully even a cure if not preventative measures in the future.
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Isabella Photo
Through all the trials and tribulations, Isabella is a very happy 3.5 year old. She walks, she talks (a lot!), plays constantly, she has her own stubborn personality, and she continues to surprise us every day. She has been through a lot, but is such a tough little girl and we love her so much! She is my inspiration. It is such a bittersweet feeling to have gone through what Isabella may go through herself. I know the heartache of the doctors visits, the surgeries, the glasses, etc. But I also know that there is hope and that everything we’re doing for her now will be worth it in the long run. Brenden and I are determined to get her the best care possible and to offer her every opportunity to thrive and succeed in life.
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7 Comments

  • holly says:

    Beautiful girls…both of you! Thanks for sharing :-):-):-)

  • Darlene Ingold-Fisher says:

    Jacqueline is my granddaughter, and the anguish felt by the entire family during her trials and tribulations of EUA’s and surgeries is indescribably heart-wrenching. She has learned to live with her disabilities and she still is a beautiful young lady and a loving, devoted mother to Isabella. Then to learn Isabella was facing the same struggles as Jacqueline was a heartbreak all over again. Isabella also is a beautiful little girl and seems to be coping throughout all that she has endured. I, too, hope and pray that modern science will find some improved methods to help Isabella avoid the loss of sight. She is beautiful in her little pink-framed glasses and we all love her dearly.

  • meghan wismer says:

    Jacqueline – I feel like i just read my own story! Youngest of three, first in my family with cataracts, developed glaucoma as a baby, no vision in my right eye, surprised when my daughter was born with cataracts, etc. So glad to see you’ve done so well! All the best to you and your family!! Meghan

  • Dawn says:

    Being a mom of a 2 year old uni aphakic it is really great to read about your experiences growing up. I think it’s very scary to a lot of us not knowing what life will be like for our children. Thank you so much for sharing things from your perspective. Big hugs and support to you and your family.

  • yessie says:

    Thank you so much for sharing your story and your daughters. I also have a baby boy who was born with bilateral cataracts and have been through so much. Including getting glaucoma after cataract surgery. I am now pregnant again and concerned about it happening all over again. It’s all so so painful to go through, but it helps to know we are not alone despite feeling like it at times. Thank you again from the bottom of my heart.

  • Kathy says:

    Thank you for sharing your family story! I am looking into adopting a child with glaucoma. No one in my family has this condition, so I was unsure about what to expect. It is clear from your story that a person with glaucoma can still live a good quality of life and be able to read, complete school, and drive a car! Thanks for taking the time to post this! Blessings to your family!

  • I was born with cataracts an then developed glaucoma at 9 yrs old. Now I’m 20 yrs old and I wear really thick glasses . God bless you and your child(;

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