Aidan's Scoliosis VBT Surgery

Denise Cawley is organizing this fundraiser.

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On May 17, Aidan is having Vertebral Body Tethering (VBT) spine surgery at Shriners Children’s Hospital in Philadelphia, PA. We are seeking love, prayers and help to defray the costs as we navigate guiding him through this stage of his health journey.

Aidan was diagnosed with scoliosis two years ago. Soon after the diagnosis, doctors at Children’s Wisconsin fit Aidan with a brace. He was compliant wearing it but later had a major growth spurt and went from holding at the 27-degree curvature to an increased curvature of 44-47 degrees, in less than two months. 50 degrees is usually the marker for traditional fusion surgery. Doctors fit him with another outrageously restrictive brace. He is supposed to wear it 18-22 hours a day. I (Denise) liken it to strapping him into the inside of a rolling pin. His movement is severely limited and wearing the brace 20 hours a day has proved impractical and impossible. Worse, Children’s Wisconsin seems to be waiting for Aidan to grow a little more so that they can fuse the majority of his spine. I felt frustrated by the lack of information we were getting and also by what felt like a hopeless march into a surgery that would majorly impact his quality of life.

Aidan’s curvature is in his lumbar-low back. Fusing that part of his spine would make him bend like a Ken doll, severely limiting his movement. Denise researched and found a different kind of spinal surgery that has been pioneered and studied for the last 18 years. It involves a special hardware called a tether. The tether screws are drilled into the vertebrae and hold a flexible cord that helps to push against the curve. As the child grows, the rest of the curve straightens out. The child’s movement is not limited because their spine can still move. It is not a fool-proof method, but it is the greatest chance of preserving movement in the spine. When Children’s Wisconsin told me Aidan would “never” be a candidate for the less invasive VBT, their response struck Denise as not true. She researched more.

The tether hardware was approved by the FDA in 2019. Shriners Children’s in Philadelphia guided the process and paid for studies and legal work to help get it approved by the FDA. The emergence of COVID limited the number of doctors being trained with this method. There are no hospitals in Wisconsin or Illinois doing it. Soon Shriners in Chicago will begin training in the surgery, but they will only take the easier cases until they are experts. I learned that VBT is best for lumbar curves because that area of the spine needs to move and flex the most. Fusing it is detrimental.

I was able to get Aidan a consultation appointment at Shriners Children’s in Philadelphia where they have done over 800 of these surgeries. We met and consulted with their top tethering expert, Amer Samdani, MD, who is their chief of surgery and specializes in both neurological and orthopedic surgery. By networking online, I made early contacts who helped me get Dr. Samdani to look at Aidan’s X-rays. After reviewing the images, he and his staff moved up our appointment. Aidan, Anne, and I flew to Philly on Feb 2.

Meeting the Shriner’s team was incredible. They are brilliant and in less than five hours we visited multiple departments and walked away with more information and answers than we had in two years of appointments in Wisconsin. Dr. Samdani is passionate about preserving movement in the lower spine. He feels Aidan is an ideal candidate for Vertebral Body Tethering (VBT) surgery. As VBT must be done on an immature spine, where the child has growth plates with room to grow, the surgery needs to happen soon. Aidan is nearer to the middle heading toward the end of his growth, thus VBT needs to happen very soon. The surgery is scheduled for May 17 in Philadelphia. We will need to stay in Philly for a week to 10 days.

The surgery is serious. VBT surgeons will collapse his lung and go in from his side to drill into his spinal column and attach the hardware. Dr. Samdani will do the lumbar portion. Another surgeon does the thoracic portion and sometimes there is a third surgeon helping with the procedure. They expect the surgery to last 8 hours and will perform a Double tether on vertebrae T11 to L4 and T12-L3.

Aidan will be in ICU until the chest tube is removed (2-3 days). The recovery is typically 6 weeks. There might be nerve issues after the surgery but we, of course, are hopeful he will be fine. Anne hopes to take three weeks off with unpaid family leave. Denise will get two weeks paid and hopes to work from home after that a bit. We will all switch off with loved ones to support Aidan and allow work to happen too.

We are asking for money to help us defray the costs of the deductible, tests, money to supplement the unpaid salary for Anne, as well as some of the travel costs. We are also reaching out to other sources for financial help. We are waiting to see if the Shriner's costs will be paid by Anne’s insurance. She has a $4,750 deductible on him, and we are waiting to hear what her insurance will cover. If they deny it there may be an appeal process with Shriners to get VBT funded. Sadly, even though it is a proven method, many insurance companies will fight covering the tethering surgery. Aidan’s MRI will be done in Wisconsin and that alone will be over $16K, of which we will be responsible for about $3K. I am reaching out to Philadelphia minister colleagues to see if anyone has an apartment, we might be able to stay at while Anne and I take turns staying in the hospital with him. We may also get to stay at Ronald McDonald House, but we only find out on the day of our stay if a room is available. It is challenging to make plans for caretaking Aidan in a city we don’t know.

Any financial support you can spare could share would help us to focus our attention on caring for Aidan. This is a huge surgery with the possibility of very positive outcomes for Aidan’s health going forward. We look forward to Aidan doing active things he loves like playing basketball and fishing.

In addition to financial help, we also would appreciate all your prayers, good wishes, and love as we navigate this journey. Closer to the date we will find out what Aidan needs