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ROP parenting Q and A

ROP parenting Q and A

Through necessity many parents of preterm babies become practical "experts" in understanding and dealing with certain health and/or behavioral difficulties. New parents of preterm babies can benefit greatly from what parents before them have learnt. Preemiehelp has enlisted the assistance of numerous parents with preterm babies to help new parents learn from their wisdom and experience.

Parent of preterm baby, Melanie has been generous enough to answer some common questions asked by new preemie parents with children who have severe visual difficulties due to retionpathy of prematurity, or ROP for short.

Parent of a preterm baby who is blind due to ROP

About Mother of Preterm Baby

  1. How many children do you have?
    3, Hailey 2 lbs 14 ½ oz (1,300 g) blind due to ROP, Nathan 6 lbs 10 oz, Hannah 7 lbs 10 oz
  2. What’s your favourite way to relax?
    To sit back & read preferably at the lake or on the beach
  3. Who or what inspires you?
    All three of my children, they have opened up a world & taught me so much that I would never had known otherwise

About your Preemie

  1. How early was your preemie born?
    Around 28-weeks gestation
  2. How much did she weigh?
    Hailey 2 lbs 14 ½ oz (1,300 grams)
  3. Were there any complications associated with your preterm birth?
    Oh yes, tons.. she was born with jaundice, sleep apnea, she required oxygen, she had pneumonia, she was given 7 blood transfusions.. I really don’t remember them all now but it was a list of 13 things.. none of which had anything to do with her eyes or being blind
  4. How did you cope when you found out your preterm baby would have visual difficulties?
    Well, I cried my heart out, had my pity party.. then made a decision that she be treated as normal as possible.
  5. Did you use any special teaching aids that are designed especially for children with visual difficulties?
    No not really, I was real young & didn’t know much or have a real good support system to learn anything.. I just did what I could
  6. Did you encourage your daughter to try lots of different things when she was little?
    Yes I practically demanded she try tons of things, that many kids would just want to try
  7. How protective do you think you need to be of a child with visual impairments?
    No more or less than any with sight, within reason of course.
  8. How did you encourage reaching certain milestones, such as learning to walk? Wow, walking! I wasn’t sure how this would happen, but like I said I just did what you would to a normal sighted child, I walked her around & encouraged her to move her legs in a standing position... at about 16 months she just got up stood for a second and took off, blew my mind!
  9. Are there any toys that you think are best for children with visual problems?
    Any that talk or make noises, any that are tactual with many different textures
  10. What’s the best advice you could give to a new parent with a preterm baby with ROP?
    Just relax, its going to be okay, their lives depend on how you see them, allow them to see themselves, & its also very important to stand up for your child & have your child be treated normal.
  11. Can you suggest any books, websites, resources that you found helpful to learn about ROP and visual impairment in preterm children?
    Honestly, I had none to rely on back when she was young.. I knew nothing. Today I look through several.. mostly those geared to helping being supportive of the Blind & their independence.. such as National Federation of the Blind, American Council of the Blind & so forth

Questions for the Preemie who is blind due to ROP

About you

  1. Name
    Hailey Walls Hubanks
  2. Age
    17
  3. Favorite subjects at school
    English, Reading, Creative Writing
  4. Hobbies
    listen to music, sing, read, write, watch TV, listen to YouTube videos
  5. Ambition
    to help people enjoy life
  6. Favorite band
    a variety of them, many 80’s through today
  7. Who or what inspires you?
    My mom & myself

Life as a preemie

  1. How hard was it to learn Braille?
    Hard at first then after I stopped refusing to work on it, it seemed so much easier
  2. What do you say when people say you shouldn’t try something because of your visual difficulties?
    I can do anything that anyone else can do.
  3. Did you ever get picked on at school?
    Yes some had many mean things to say
  4. How did you cope when you couldn’t do the same thing as other kids?
    I did different things like, when they played dodge ball, Id jump rope or exercise.
  5. Have you ever tried to learn a musical instrument? Which one? How was it?
    Yes, Piano & it was really fun.. but, it took a long time to find someone who could teach that would teach me by ear, then she got married & moved away.. so now i have no one to teach me
  6. What was your favorite toy when you were little?
    My keyboard momma bought me when I was 4 yrs old
  7. What are your favorite games?
    Video games, mostly the Super Nintendo Super Mario brothers
  8. What advice would you give to other children with visual impairment?
    Try your best at everything & don’t let anyone tell you that you can’t do something


Help for Children with Visual Difficulties



Personal Comments

Blindness was difficult for me to deal with when I was younger but, as I have gotten older I realize it’s a part of my life, Its part of what makes me the person I am, and I'm okay with that

 

 


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Preemie, Premmie, or Prem?

Most babies spend between 38 and 42 weeks in their mother’s uterus. So, technically a preterm birth, preemie, premmie, or prem, is an infant who is born less than 37 completed gestational weeks. 


Read More: Defining Preterm birth


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