Background:
Nearly 12 years ago we participated in a NIH Clinical Trial for in-utero Spina Bifida surgery at UCSF called the MOM’s Trial. We were not selected for the randomized surgery and had after birth surgical closure.
Next week my son will undergo surgery #26 for scar tissue of the spinal cord called, tethered cord. This is his 3rd for this particular surgery where scar tissue tethers to the nerves creating scoliosis and nerve damage to the bowel and bladder and other organs.
The surgery will not be performed by our beloved medical team captain and neurosurgeon, Dr. Timothy George. His unexpected death in 2019 was a shock. We continue to deeply mourn the loss of our trusted 12-year relationship.
It is serendipitous that we are now full circle working again with a team affiliated with The Fetal Center at Children’s Memorial Herman Hospital who were the first in the Southwestern United States to perform open fetal surgery for the repair of Spina Bifida following the published results and our participation in the Mom’s Trial.
Present Challenge:
Nearly 12 years ago we participated in a NIH Clinical Trial for in-utero Spina Bifida surgery at UCSF called the MOM’s Trial. We were not selected for the randomized surgery and had after birth surgical closure.
Next week my son will undergo surgery #26 for scar tissue of the spinal cord called, tethered cord. This is his 3rd for this particular surgery where scar tissue tethers to the nerves creating scoliosis and nerve damage to the bowel and bladder and other organs.
Dr. George had been coaching and preparing us about this impending surgery. We had been waiting for the scales to tip to where the possibility of damage outweighed the risks. The damage is done and time for surgery is now.
It has taken exhaustive search efforts to find a new neurosurgeon for this highly risky procedure on Myelomeningocele (MMC)the most common and most severe form of spina bifida.
Present Challenge:
The coordination challenge lie in the urgency of time being less than 5 business days away from surgery. The challenge includes securing prior authorizations and insurance approvals, travel and childcare arrangements, compete several new image studies, and provide a 12-year historical medical record release for a team of new providers to review prior to surgery.
As a determined complex care coordinator, I seek and develop our individual audacious pathways to medical care. The navigational challenge has been refined over our medical tenure yet the approach continues to be with blind perseverance, and trust that my proactive preparation and faith have prepared a safety net for such a situation.
Developing a Safety Net of Adequate Insurance and Technology:
The costly initial investment of time along with a financial subscription in a start-up medical technology, Picnic Health, has proven to eliminate many burdens. It puts patients/users in control of their health by collecting and digitizing their medical records into an easy to understand timeline.
This early investment of time and cost allows us to travel to doctors without flash drives and cases of paper records. We also don't have to anxiously wait days or weeks to request and receive medical record releases.
Having adequate health insurance is the other vital component for receiving appropriate healthcare. While we subscribe to both primary and secondary insurance (provided by a disability waiver Medicaid/MCO program state + federally funded), the costs associated with this surgical challenge would be insurmountable otherwise.
We are thankful that we have access to the best insurance, technology, and healthcare that allows us treatment by the best physicians improving and sustaining the quality of life.
When we turn to our faith and do all we can, we are able to do things we never dreamed were possible—or survive things we hoped we’d never have to face.
That is why my son is featured in the multinational commercial proclaiming,
"I Can Put Up a Fight”
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