Adele's Journey Into the World of Oculoplastic Surgery, Ocular Prosthetics, and Orbital Reconstruction
by David Miller
LOVELAND, OHIO – Adele Jacob was born without eyes, a rare condition called anophthalmis, which means she is blind and needs lots of help with medical care and expenses.
There will be a fund raiser benefit for baby Adele on November 7 at 3 PM at
Cindy's Friendly Tavern in Historic Downtown Loveland.
(Directions)There will be a chili super and raffle, along with music.
You can bid on a Dell Mini 19 laptop computer with GPS. The drawing will be at 10 PM.
As the nurse took Adele to her warmer to wipe her off and take measurements, I realized that she had a look of concern on her face. She wiped her face again and again, and then I realized what she was looking for - her eyes. I asked the nurse if she was breathing well, and she was, as exampled by some nice crying.
I'll never forget the look on the nurse's face, or my mother's. As I scanned their faces, I heard the words, "Does she have eyes?" leave my mouth. The response from our nurse that followed, "I'm not sure" made that sick tinkling feeling of fear wash over me. I knew at that moment that our baby was blind.
Adele's mom, Molly Jocob told Loveland Magazine, "We do have insurance, however the nature of Adele's condition causes dispute with regards to what is covered." Adele will need conformers which are a plastic shell-like device made by an ocularist that can
be placed inside the orbit to help support the growth of the eye socket
and the bones in the face. As Adele grows, and the orbits and facial bones develop, the ocularist can also make prosthetic (artificial) eyes. This is necessary to stimulate the socket tissues and bony
orbit to grow at a normal rate. Molly said, "Because of Adele's age and rapid growth, the ocularist said that she will need a new "set" every three weeks or so."
The family has already traveled to Indianapolis for a visit to the ocularist where Adele was fitted with the first of many conformers. It was an all day event, as Adele's eye sockets were measured, the right size conformers fabricated, then the fitting. Molly said, "Our twice a month trips to Indianapolis, three hours one way are becoming costly with the raising gas prices." Adele has also had many appointments with pediatricians, and a geneticist at Childrens Hospital.
The ocularist said that she anticipates Adele having her first set of actual
prosthetic eyes around the time she turns six months old, and to be thinking about an eye color. Molly said, "Never thought we'd get to
choose our child's eye color." She said that her and her family can't wait to see Adele with them
in. "However, I know in actuality that she won't see us, but to see what it
would be like to have her 'look' at us, will be both wonderful and
heartbreaking."
The family does have insurance, however the nature of Adele's condition causes dispute with regards to what is covered. According to Molly, the conformers and prosthetics are considered "durable medical equipment" and therefore the insurance company has been arguing concerning the medical necessity of their use. Molly said, "This is also true with the oculoplastic surgeries she will have in the future." She said that without these treatments, the bony structures of the face will essentially "cave in" rendering her sinus, olefactory, and auditory senses greatly depressed.
Each set of conformers costs approximately $1000. Payment for Adele's first set, were denied by the insurance company. Adele will receive her second set on Thursday. Aside from these large expenses, Adele requires eye ointments at $10 a tube, which she needs every three days or so. Molly said, "At this time the small expenses seem minute compared to the large expenses that are yet to come."
Molly wants the best for her child. She was herself born without her right eye, upper palatal malformation, and an extra digit on each hand. "As a parent, you want better for your children than what you had or
experienced as a child, and Adele could be faced with challenges and
difficulties that none of us could imagine, even myself." She knows the frustration of constantly thinking about her appearance to
others, the pain of oversized prosthetics, the longing to be "normal" -
things she never wants her child to experience.
Molly was told that her malformations were caused by a random genetic defect, and therefore no reason to believe she had a inherited genetic abnormality, that could be passed along to her children. " Relieved at this, my husband and I proceeded to have three more children, three boys, all 'normal."
"Who knew? Not indicated by ultrasound or any other routine blood test,
or the three children we'd had prior to Adele, her anophthalmia hit us
blind sided."
"In a way, we are grateful Adele came when she did. Had she been our
first, we could not have imagined taking the risk of potentially having
another child afflicted with blindness and would not have proceeded to
have any other children. Now, Adele has three older brothers who will
enrich her sensory input as only three feisty older brothers can."
Right now Molly says they are just playing a waiting game - allowing Adele's structures to try and grow as much as they can until surgical intervention is needed. "We've been told these surgeries will begin between the ages of one and three years, and are anxious about the pending insurance battle we'll be fighting then as well."
So, Adele is here, healthy and growing like a weed. We've all cherished
the special moments of bonding that we've had with her, and look
forward to each day we spend together as a family. Soon, the endless
visits to numerous doctors begin, as well as the journey we will take
as a family adapting to the world of blindness. We know that together
we will provide an enriching and loving environment for Adele, and that
we will all grow in ways we cannot imagine. We are so very thankful for
our precious little girl, and for the wonderful thoughts and wishes
from everyone.
Donations to the Adele C. Jacob benefit fund can be made at any US Bank location.
To find the location closest to you, click here.
All proceeds donated will be used solely for Adele's care and medical treatment.
For more details contact:
Cathy Burris - 324.6229
Monica Fein - 683.8112
Parents
Molly and Neal Jacob
937.584.2127
mnjacobhs@aol.comGrandparents
Cathy Burris -
cmb3lovind@aol.comMarty Burris -
combhome@aol.comKen and Karen Jacob -
kwjake539@hotmail.com
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