PARENTS INTUITION When you think something is wrong with your child, but the doctors disagree.

You hold your newborn for the first time and you realize something’s wrong.  The doctors and nurses state that “You’re just a new mother/father, don’t worry, nothing’s wrong,” but you, the parent, know differently.   You deeply feel in the pit of your stomach that something isn’t right.

That is my story.  My oldest daughter, Taylor, pictured above, is 22-years-old.  The first time I held her, I, like every new mother, examined and kissed almost every inch of her tiny bodyThen she opened her eyes.  Her right eye was misshaped and noticeably smaller than the big, beautiful, left, blue eye.  My husband agreed, and I immediately summoned the nurse.  “I don’t see any difference,” she calmly said as she stared at our daughter.  “What!” I said not as calm as she.  “I want another nurse!”  And another nurse came in and told us the same.  Then another.  Then a pediatrician who was in the nursery at that time examined her with those same words, “Nothing’s wrong!” After him, I kept hearing I was either paranoid or possibly having postpartum depression.  My husband tried to soothe me to no avail, because I knew that there was something wrong with her eye.

 Every day I looked into her eyes, and I could see it, and so frustrated that no one in the medical community could.  The pediatrician that I spent months trying to find, as most new parents do, told me at her six-week check-up that “I was just one of those new mothers that wanted everything perfect on my child.” Needless to say, he was not our doctor very long, but leaving his office that day, I was in tears.  I did not feel defeated, just exhausted.  I then looked up, and at the end of the hall was a small sign that read, “Pediatric Ophthalmologist.”

I burst through the door, crying, holding this small precious baby, running my words together at the speed of lighting, and stating that something was wrong, but all doctors and nurses kept telling me otherwise, but I knew something was wrong!  The receptionist slowly stood, looked at my daughter and said, “I’ll be right back…”  Then the doctor’s assistant appeared, and said, “I’ll be right back, Ma’am…”  Then the doctor emerged, stared at my daughter and said, “I’m sorry, but there is something definitely wrong with your child’s right eye.”  At 11:00 A.M. the crying slowly stopped as he instructed his assistant to put us in a room, where he examined my daughter and promptly called the Head of Pediatric Ophthalmology at Children’s Hospital.  At 2:00 P.M we were in the office of this very experienced Ophthalmologist, and at 5:00 P.M she was admitted into the hospital for examination under anesthesia – it was the first of twenty hospital visits, with the last, being her choice at age 18, to have her eye removed.

She was diagnosed with Micropthalmia – malformation of the globe; Aphakia -the absence of the lens of the eye, due to surgical removal, a perforating wound or ulcer, or congenital anomaly; a Cataract – clouding of the lens inside the eye which leads to a decrease in vision, common cause of blindness; Glaucoma – abnormally high pressure in the eye, which may cause loss of vision and optic nerve damage; Morning Glory Syndrome – anomaly of the optic papilla (region where the optic nerve emerges in the eye).

The ophthalmologist called the pediatrician that told me that I wanted a perfect child and told him – not suggested, but told – that when a new parent comes into his office and she or he is concerned about their child’s eye(s), just send them to him because there is a high probability, regardless if they are new parents or not, that something is wrong.  And then he continued, in front of me, to tell this pediatrician all that was wrong with my daughter, and that “the mother was right, as most mothers usually are.” 

When you feel that parental intuition that something is wrong with your child, there is the possibility that something IS wrong.  That does not make you a paranoid mother or father.  I do not wish to disregard the knowledge of anyone in the medical community for I immeasurably respect them, but I do not feel they would object to you saying, “I appreciate your help, but I feel something is wrong… I’m sure you won’t mind me seeking another opinion.” Do not hesitate to go see a specialist or two when you feel that tugging in the pit of your stomach.  You owe it to yourself, but mostly to your child.  It is our responsibility as parents to turn over every leaf to ensure that our children are healthy, or in some cases, not healthy.

I will always be grateful to the wonderful ophthalmologists and ophthalmic surgeon that walked us through years of procedures, and a talented ocularist at Ocular Prosthetics in Los Angeles that made not only her beautiful prosthesis, but all the ocular hand-painted shells since she was five-years-old that matched her normal eye, which covered her small eyeball to help retain her bone structure.   They each had a hand in helping her evolve into the lovely, confident, creative, successful young lady that she is today.      

 Have you had a similar experience?  Please feel free to share.  There are other parents that may find strength in your story.  Whether you know it or not, you’re not alone.  Parents helping parents… that makes for a great team!

–Debbie Caldwell

4 thoughts on “PARENTS INTUITION When you think something is wrong with your child, but the doctors disagree.

  1. Hi Debbie,
    You should be so proud of yourself and your amazing family! I am so blessed to have been a part in helping Taylor with her prosthetics needs . Taylor is an inspiring young woman with a great future. It is always so comforting to witness the mutual support and love within your family.
    I am also grateful to Taylor for allowing us to use her photo on our website. It has inspired so many patients in our practice by giving them confidence to know they will be ok too!
    My warmest regards to you and your family…..Stephen

    • Thank you, Stephen! Going through what Taylor and your patients experience can be frightening, but you and your staff at Ocular Prosthetics were so helpful and diligent in making her experience smooth as possible. It makes the process so much easier – especially for the parents – when the ones doing the work genuinely cares.
      Best to all,
      Debbie Caldwell

      • My baby is 1 year old , his right eye is micropthalmic. Can you tell me plz is there any option that both eyes become same without removing micro eye. Is there any conformer or lens that we can place for whole life

      • Hi Hira,
        I’m fully aware of the emotions you are feeling at this time in his life. I vividly remember my daughter being that age and the endless questions and anxiety I had at that time. But just know all will be well if you get him the medical attention he needs.

        The microphthalmic eye does not grow to normal size. That was one of my questions, as well. The probable result of his eye is blindness or extreme limited vision. His left eye will continue to develop and grow just fine, but not his “special” eye. According to The National Birth Defects Network and other researchers, 1 in every 5,300 babies born in the United States will have anophthalmia or microphthalmia.

        I hope you are seeing a Pediatric Ophthalmologist for his condition. Usually there are other issues with this condition, such as glaucoma and cataracts. Keeping the shape of his eye socket is extremely important and should be your priority, as well as the treatment for the glaucoma or cataracts, should he have them. You will need to see an Ocularist who will fit and make your son what he needs for his eye. I’m not sure where you live, but your Pediatric Ophthalmologist should be able to tell you where the closest one is to your home. As he grows and his bone structure grows, he will continue to be fitted with the appropriate conformer (it is clear, not painted to match the other eye), and/or a scleral shell which is a conformer, but painted to match his healthy eye, which is what my daughter had starting at five-years-old, so whatever is needed as his eye socket structure changes and grows.

        It is also very important for you to protect his healthy eye. So please keep safety glasses on him, especially when playing outdoors, and also sunglasses.

        We wish you and your son lots of well wishes, and thank you for reaching out to us.

        Sincerely,
        Debbie Caldwell
        Parent, and Co-Creator, Harry Pierre & PeTunia Puddlesworth

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