Our sweet girl was born on October 26, 2017 at 1:14PM. She was sassy, loud and very healthy, we named her Katia Zoe.
At around 4 months of age I started to notice that Katia’s right eye would not focus as well as her left eye. I know someone is always telling us to not compare to other kids, but you can’t help it when you have 3 other babies around her same age being able to focus both their eyes. I brought this up during her 4 month well child check and the pediatrician immediately referred us to Seattle Children’s and within less than a month we were seeing Dr. Baran. She gave us the diagnosis of PHPV or PFV and unilateral congenital cataract.
Of course, my husband and I had no idea what this meant. Dr. Baran went on to explain that we would try to gain as much vision as possible shooting for at least 20/200 and then the word legally blind was thrown at us… this was very overwhelming especially since the next step was surgery, on our perfect babe who wasn’t even a year old. It took some time to take in the news and especially the thought of Katia being put under general anesthesia.
Within a couple weeks we were scheduled for surgery. We arrived early that morning to check in and everyone was amazing. They took Katia back to prepare her and Juan and I left to grab something to eat and for me to pump. As I had settled down finally, we were called to the OR desk. My husband left to see what had happened as it had only been 30 minutes that Katia had been back there. He came back to let me know that the hyaloid vascular system still had blood flow. Dr. Baran was not counting on this as she did not have the tools necessary to prevent major blood loss. I quickly stopped pumping and we left to see her. Katia was handed to me and immediately snuggled up to me.
At this point Dr. Baran told us we were going to see the Dr. Campbell, Retina Specialist at Casey Eye Institute in Portland, OR. I have never felt calmer in my life. Funny to say especially because of the situation my daughter was going through, but I knew in my heart this is who she needed.
By the time we got to see Dr. Campbell, Katia was 7 months. We went down to Portland after Memorial Day weekend and met Dr. Campbell and his assistant Denise. Katia went in for surgery the next day. The staff was amazing and like I said I felt very calm through this procedure but anxious for it to be over. Dr. Campbell came out after about 2 hours and let us know the surgery was successful and that our sweet girl did amazing. We saw her, and she really was doing so well. We began our journey of eye drops and have since followed up with Dr. Baran back at Children’s and have started patching.
Katia is now going on 10 months old and we are already gaining vision as of her most recent checkup. I know it’s going to be a long ride and some days a tough one but we as parents are willing to do anything for our children.
Most days, reflecting back, I realize I never knew I had this strength until we were blessed with little miss Katia.
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