Photo: Maple Park resident Bri Erickson, diagnosed with infantile glaucoma soon after birth, underwent surgery on June 4 to help improve her condition. The procedure was made possible by donations from
the community and strangers who donated through
www.youcaring.com. Courtesy Photo
MP family receives support for infant daughter’s eye surgery
by Susan O’Neill
Maple Park—Katie Sexton noticed some things about her daughter Bridget (or Bri) just a few days after she was born, but it would take her four months to convince her family doctor that there was something wrong.
Katie, a Maple Park resident, said that Bri never babbled or smiled like other babies. She wouldn’t make eye contact, and she was very sensitive to light.
“She was so quiet,” Katie said.
When she brought her concerns to her doctor, he told her that it was too early to tell if something was wrong. It was the nurse practitioner who finally observed that Bridget’s eyes were very large.
They were referred to an opthamologist, who did an eye exam with Bri under anesthesia. The opthamologist told Katie her daughter needed surgery right away. Her diagnosis was infantile glaucoma, which means a build-up of fluid behind her eyes.
The surgery relieved a lot of the pressure from the fluid, but there was already some damage to her cornea. Normal pressure in the eyes from fluid is in the single digits, and Bridget’s was over 40. In addition to the painful pressure on the eyes, the opthamologist told her that infantile glaucoma can cause major damage to the eyes, and could lead to blindness.
The doctor wasn’t sure what had caused the glaucoma, and Bri also had some developmental delays. She was referred to a geneticist and a neurologist, and began physical and vision therapy.
Within two weeks, she started rolling over, Katie said.
However, treating infantile glaucoma is much more difficult than it is in adults, Sexton said. Infants’ eyes heal differently. The incisions made in the eyes to relieve the pressure heal quickly and the pressure begins to build again.
She can’t tell them when she is hurting, and crying makes the pressure rise.
Although there is no cure for glaucoma, her doctor told Katie that there was a specific surgery that held a lot of promise for improvement. However, he did not have the skills to do the surgery, nor did any other doctor in the state of Illinois.
They found a doctor in Pittsburgh that could do the surgery, but their insurance company would not cover the procedure because it was an out-of-state provider. The surgery would cost a total of $15,000 to $20,000 out of pocket. They would also have to provide a down payment of $9,000 by the hospital’s deadline or they would take Bri off the surgical list.
“I just didn’t know how to live in a world where my daughter was blind,” Katie said.
Katie knew she had to find the money to pay for Bri’s surgery.
Katie’s family has held two fundraisers so far. They received donations for raffle drawings, including trees from a landscaper and mountain bikes from a bike shop. During the first event, they raised $1,400 in four hours.
Katie and her husband emptied their savings account, and Katie found a website called youcaring.com for online fundraisers.
Through Facebook, word of mouth, newspaper articles and family telling friends, people came forward in a major way, Katie said. They received more than 100 donations from the website, with a large percentage coming from people the Sextons did not know. People gave their money and their words of support and prayer.
“We were in tears almost every single day, watching the donations come in on the website,” she said. “It’s great to know that all of these people have helped and have opened their hearts to us, and especially to Bri.”
They raised enough for the hospital’s down payment, and Bri had the surgery on June 4. Since then, she has made major strides. She crawls, she feeds herself, and she is developing her fine motor skills.
“She’s almost where she should be for her age,” Katie said. “She’s very, very brave, and she definitely works very hard. She’s come so, so far.”
Bri turned one year old on July 1, and the family is having a combination birthday and thank-you party on Sunday, July 22, for the family and friends who have done so much to help. They decided to wait so that Sexton’s two sisters from out of town could be here.
“Without everyone who donated, we would not have been able to have the surgery,” Katie said.
With the surgery behind them, they are back in fundraising mode, as the remaining bills have started to arrive from the hospital. They are planning to hold additional fundraisers, and they hope to pay off the rest of the hospital bills by the end of the year.
In the meantime, Bri will get glasses in a couple of weeks, and for now is wearing an eye patch. She’s getting additional vision therapy and speech therapy and will continue to have pressure tests every six weeks. Their hope is that she won’t need additional surgery.
If she does, however, Dr. Wingard, who was trained by the doctor who did Bri’s surgery in Pittsburgh, will soon be in practice at their opthamologist’s office in Wheaton, Ill. This time, if she does need surgery, the family’s insurance will cover it.
For more information or to make a donation and offer your support, visit the website at youcaring.com/babybrineedstosee.