As a parent, it’s heartbreaking to know that your newborn child has disabilities and will need surgery. You fear for your child’s life and hope that the surgery will go well. On top of this mountain of stress, you worry about how you’re going to pay for it—even if you have insurance.
That was the story of Jessica and Samuel Hibben of Rio Rancho, New Mexico. Their son, Rafe, was born with hypotonic cerebral palsy, cortical visual impairment and a global developmental delay. Not only were his body muscles weak, but his brain and eyes were not communicating with each other, which affected his ability to see. At four months old, he began working with physical, occupational and speech therapists and a developmental specialist.
“His eyes were constantly crossed,” Jessica said. “He could see lights and some big figures moving, but other than that, he couldn’t see or focus on anything. His eye muscles weren’t strong enough to stay in the middle of his eyes.”
Rafe’s ophthalmologist recommended a corrective eye muscle surgery performed by a neuro-ophthalmologist. The problem was that the only neuro-ophthalmologist in the state of New Mexico had recently moved to California. Rafe was then referred to Dr. Veeral Shah at Texas Children’s Hospital.
The family traveled to Houston for appointments with Dr. Shah in December 2016 and March 2017. He told Rafe’s parents that surgery should be performed before Rafe was 18 months old for the greatest chance of success.
Samuel is a combat veteran of the United States Army, and Rafe was on his military insurance plan. However, it covered just the first two visits, and the Hibbens could afford to pay only a portion of the cost of the $25,000 operation out of pocket.
“Texas Children’s ended up being ’out of network’ for us, which was a huge bummer because we had already spent a lot of our own money to fly there and see Dr. Shah,” Jessica recalled.
Leo Conway in the Admissions office told her about the Charity Care Committee at Texas Children’s, and Jessica wrote a letter to explain their family’s struggle to pay the entire amount. After careful consideration, the committee agreed to provide assistance. Jessica couldn’t believe it.
“When I found out they were going to help us pay for it, I cried,” she said. “I was shaking. And my husband was floored. We were so thankful.”
Relieved from this huge financial burden, the family returned to Texas Children’s in May for Rafe’s surgery.
“We stayed for eight days to ensure that he didn’t get an infection,” Jessica said. “We had to live in a hotel room, so not having to pay for the surgery was a massive relief for us.”
The procedure was successful, and from the minute Rafe woke up after his one-and-a-half hour surgery, his parents could tell the difference. His vision continued to improve over time.
“His eyes were bloody at first, but they were straight from the get-go,” Jessica said. “Over the next few months, between Dr. Shah and his vision therapist in New Mexico, we started seeing a difference. His brain was really connecting with his eyes. Without surgery, his brain wouldn’t have gotten that chance. It impacted his entire quality of life.” Throughout it all, Texas Children’s physicians and staff provided the Hibbens with the comfort and hope they needed.
“The scariest day of my life was having my son under anesthesia for his eye surgery,” she said. “When I finally saw him in recovery, I cried for 30 minutes, but everyone helped me stay calm and assured me that he was okay. From beginning to end, everyone at Texas Children’s was incredible, from the people setting up the surgery, to the nurses who kept updating us. Being able to download an app on your phone and have a nurse update you while your child is in the operating room was amazing.”
Today, the Hibbens have resumed their normal lives in New Mexico. Rafe, who is now 2 years old, loves swimming, snuggling with his parents and walking around with his walker—all while being able to see clearly.
“Before his surgery, when I would take him to the grocery store, his eye muscles were so weak that he would just look down,” Jessica said. “Now, he can sit up and look around at things.”
“I’m so thankful for Dr. Shah, all the nurses, receptionists and the Finance department—and of course, for the Charity Care Committee for giving us the financial help we needed,” Jessica said. “It was massive, and it changed my son’s life for the better—immeasurably. It allowed us to move forward instead of backwards in terms of Rafe’s care and in terms of our lives.”