Life as my little man
Hey Everyone,
What is PFV
The typical fetus has food called nutrients flowing into its eyes before birth. The nutrients flow into the eyes so that they can grow. They move through the eyes in a system of tubes called the hyaloid system. Another word for tubes in the body is “vasculature.” The hyaloid system can be called “fetal vasculature” because it is a series of tubes in an unborn baby or fetus. The hyaloid system is located in the vitreous of the fetus’s eyes. The vitreous is the gel inside the eye that keeps it round. The hyaloid system usually dissolves into the gel of the vitreous before the baby is born. In babies who have PFV, however, the hyaloid system does not dissolve. It stays in the eyes. Another word for stays is “persists.” The hyaloid system or “fetal vasculature” is persistent after the babies who have PFV are born. This is why the condition is called persistent fetal vasculature.
What my vision is like
People who have PFV have vision that is more blurry than people who are fully-sighted. When light comes into their eye, it does not go directly to the back of the eye to send a message to the brain. It moves through the hazy vitreous. Some of the light is blocked by the haziness. Some of the light is reflected into different directions. The image that gets to the brain is blurry and sometimes hard to understand. They have a hard time reading print. Sometimes the persistent vasculature pulls on the lens. The lens loses its shape. It no longer can give a clear focus to light passing through it. This causes blind spots. This is why my right eye is smaller than my left eye.
What causes PFV
Doctors do not know what causes it. They say it is something that just happens.
How Mom and Dad found out I have PFV
and the surgery
My doctor, Dr. Chopra came to check me out after I was born, and noticed that I had a white spot on my pupil in my right eye. He was not sure why, he had never seen that before, he thought it would go away. He came back later that evening to check it again, it was still there. So he called Dr. Whitfill (my eye doctor in Wichita) to ask him about my white spot. Dr. Whitfill wanted to see me. So the day after we got out of the hospital Mommy and Daddy took me to see him. He checked me out and told Mommy and Daddy that I have what they call PFV, and wants me to see a specialist in Kansas City; he referred me to Dr. Hug. A couple days after Christmas we made our trip to Kansas City to meet Dr. Hug and have her look at my eye. She told my Mommy and Daddy the same thing. I have PFV and a cataract, which happens at times when babies are born with PFV. The cataract is the simple fix. The PFV was a lot tougher. We scheduled surgery for January 21. Surgery was supposed to take 1.5 hours; my surgery took 3 hours because of all the plaque and blood vessels she had to remove. She had to leave some membrane that was attached to what make my eye water. For several reasons, one so my eye can water, two so that when I get bigger it decreases the risk of later developing glaucoma, and the last and main reason is so that my plaque buildup doesn’t come back. She also had to enlarge my pupil to lower my chances of getting my plaque back, and give me less blind spots.
Post Surgery
After surgery I had to wear a shield for the rest of the day and night. The next morning I got to take it off. One week after surgery, Dr. Hug put in a contact lens to give me vision and develop my vision. I got to see the world for the first time with both eyes!! Mommy and Daddy were so happy, when they saw my expressions!! I will have to get a new contact every so often. Each contact lens will be a different prescription. I have to do patch therapy. With the contact I will not have to wear glasses, because the contact will be sending the signals to my brain that need to be sent. With the patch therapy I will have to cover my left side so my “new” eye will work with my brain. Dr. Hug wants to make sure my brain and eyes are working together, like they should be. Once I get older and my eye is done developing and has reached its full size and shape, Dr. Hug might do another surgery to put in a permanent lens. She could not put the permanent lens in now, because my eye is so tiny and has not reached its full growth size yet. It will be a continuous journey that we will be on for the rest of my life.
I love all of you!!
I also just want to thank each and every one of you for all the prayers you sent up for me and my Mommy and Daddy! I know you all are still sending up prayers since I am still on my journey, so thanks so much, they are much appreciated. My mommy wanted me to tell you that she is really appreciated of the prayers for the Doctors and the strength that we all were seeking during surgery and this whole journey.
Love
Baby Jax
What is PFV
The typical fetus has food called nutrients flowing into its eyes before birth. The nutrients flow into the eyes so that they can grow. They move through the eyes in a system of tubes called the hyaloid system. Another word for tubes in the body is “vasculature.” The hyaloid system can be called “fetal vasculature” because it is a series of tubes in an unborn baby or fetus. The hyaloid system is located in the vitreous of the fetus’s eyes. The vitreous is the gel inside the eye that keeps it round. The hyaloid system usually dissolves into the gel of the vitreous before the baby is born. In babies who have PFV, however, the hyaloid system does not dissolve. It stays in the eyes. Another word for stays is “persists.” The hyaloid system or “fetal vasculature” is persistent after the babies who have PFV are born. This is why the condition is called persistent fetal vasculature.
What my vision is like
People who have PFV have vision that is more blurry than people who are fully-sighted. When light comes into their eye, it does not go directly to the back of the eye to send a message to the brain. It moves through the hazy vitreous. Some of the light is blocked by the haziness. Some of the light is reflected into different directions. The image that gets to the brain is blurry and sometimes hard to understand. They have a hard time reading print. Sometimes the persistent vasculature pulls on the lens. The lens loses its shape. It no longer can give a clear focus to light passing through it. This causes blind spots. This is why my right eye is smaller than my left eye.
What causes PFV
Doctors do not know what causes it. They say it is something that just happens.
How Mom and Dad found out I have PFV
and the surgery
My doctor, Dr. Chopra came to check me out after I was born, and noticed that I had a white spot on my pupil in my right eye. He was not sure why, he had never seen that before, he thought it would go away. He came back later that evening to check it again, it was still there. So he called Dr. Whitfill (my eye doctor in Wichita) to ask him about my white spot. Dr. Whitfill wanted to see me. So the day after we got out of the hospital Mommy and Daddy took me to see him. He checked me out and told Mommy and Daddy that I have what they call PFV, and wants me to see a specialist in Kansas City; he referred me to Dr. Hug. A couple days after Christmas we made our trip to Kansas City to meet Dr. Hug and have her look at my eye. She told my Mommy and Daddy the same thing. I have PFV and a cataract, which happens at times when babies are born with PFV. The cataract is the simple fix. The PFV was a lot tougher. We scheduled surgery for January 21. Surgery was supposed to take 1.5 hours; my surgery took 3 hours because of all the plaque and blood vessels she had to remove. She had to leave some membrane that was attached to what make my eye water. For several reasons, one so my eye can water, two so that when I get bigger it decreases the risk of later developing glaucoma, and the last and main reason is so that my plaque buildup doesn’t come back. She also had to enlarge my pupil to lower my chances of getting my plaque back, and give me less blind spots.
Post Surgery
After surgery I had to wear a shield for the rest of the day and night. The next morning I got to take it off. One week after surgery, Dr. Hug put in a contact lens to give me vision and develop my vision. I got to see the world for the first time with both eyes!! Mommy and Daddy were so happy, when they saw my expressions!! I will have to get a new contact every so often. Each contact lens will be a different prescription. I have to do patch therapy. With the contact I will not have to wear glasses, because the contact will be sending the signals to my brain that need to be sent. With the patch therapy I will have to cover my left side so my “new” eye will work with my brain. Dr. Hug wants to make sure my brain and eyes are working together, like they should be. Once I get older and my eye is done developing and has reached its full size and shape, Dr. Hug might do another surgery to put in a permanent lens. She could not put the permanent lens in now, because my eye is so tiny and has not reached its full growth size yet. It will be a continuous journey that we will be on for the rest of my life.
I love all of you!!
I also just want to thank each and every one of you for all the prayers you sent up for me and my Mommy and Daddy! I know you all are still sending up prayers since I am still on my journey, so thanks so much, they are much appreciated. My mommy wanted me to tell you that she is really appreciated of the prayers for the Doctors and the strength that we all were seeking during surgery and this whole journey.
Love
Baby Jax
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