During a recent ultrasound it was discovered that Baby Liam had a rare and very severe form of spina bifida, a defect which results in the nerves of the spinal cord protruding out of his back and into the amniotic fluid. This defect was also allowing spinal fluid to leak, causing Liam’s brainstem to pull down into the spinal column. Unresolved these issues would result in significant mental deficiencies, paralysis of the legs and lower extremities, lack of normal bowel and bladder function, and possibly death.
Through a series of divinely inspired events and fortuitous timing Kali and Neal were able to fly from their home in Idaho to be seen by a highly specialized team of doctors in Houston, Texas. This team has revolutionized repair of spina bifida defects. A sequence of medical breakthroughs have allowed Dr.’s Whitehead and Belfort to pioneer a repair process performed while the infant is still in the womb to mitigate the long term damage and substantially increase the chances that the child can lead a more normal life (read more about it here in the New York Times ). At this time they are the only two doctors in the world who can perform this type of surgery. Instead of being consigned to a wheelchair Liam will have a chance a walk. Instead of requiring constant intervention to relieve his bowels and bladder he may be able to function normally. Instead of significant mental impairment Liam has a very high chance of completely normal cognition. Calling this surgery life changing drastically understates how much it will improve Liam’s quality of life. Due to the rare nature of this defect Kali and Liam were only the 50th surgical repair completed in this way in the world to date.
The operation was performed successfully without complication and the defect was completely repaired. Mom and baby are both on the mend. Because of the rare and specialized nature of this surgery very close monitoring is required throughout the remainder of pregnancy by the team of doctors in Texas. Until delivery Kali and Neal are required to live within 15 miles of Texas Children’s in Houston. After delivery Liam will remain in NICU for 2 months or more and have additional surgeries (such as placement of brain shunts to manage excess fluid build-up). Their little family will be obligated to live near a Primary Children’s hospital from this time forth in order to have immediate access to the specialized care their son will need. The list of challenges facing them beyond the medical include physical relocation, astronomical financial cost, putting schooling on hold, possibly changing colleges, quitting current employment, etc.
In a cruel twist of fate Kali and Neal’s insurance has refused to pay for the specialized surgery and requisite post-operative care. The refusal to pay not only includes the immediate medical costs, but the housing costs that will be accrued during their months long unplanned move to Houston which insurance had previously told them would be paid in full. This only adds to a nearly crushing financial burden of uncovered expenses which they have absorbed such as the purchase of plane tickets, immediate food and living costs, and the inability to continue their employment due to physical relocation. This is where you come in.
Many miracles have occurred on their behalf, and as the bills roll in it is apparent that another one is necessary. The cumulative medical costs have the potential to reach far above six figures, and the expense burden will continue to extend into the coming months and years. Kali and Neal’s brave and selfless decision to give their child the best life they possibly can will have financial consequences that few would ever consider shouldering. Those of us close to them would like to in some way help offset the immense debt they face by raising money on their behalf. We feel strongly that their courageous choice despite physical, emotional, and financial suffering should be rewarded in kind by the generosity of those who are willing to shoulder this burden alongside them. Donating a small amount as a gift will distribute some of the financial weight over many shoulders. The amount we are aiming for is far below the actual cumulative costs, but would significantly help these wonderful young people who through no fault of their own have been handed a trial few would ever wish to endure.
If you would like updates on their situation as it unfolds you can follow their Facebook link here: Baby Buckles Updates
DonationsSee top donations
- Caroline Olsen
- Janice Queen
- Janette Gould
- Andrew Ferguson
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more