Our son (now age 16) was born prematurely and as a result has a form of cerebral palsy (CP). We are quite fortunate in that he is cognitively normal and quite bright in fact – an A student in the 10th grade. As a result of the CP, our son has ongoing issues with very significant spasticity in his legs and to a lesser extent his arms and hands. This combined with teen growth must be managed surgically to prevent permanent deformity and to just make his life and independence more livable.
He has had 4 previous surgeries and has attended physical therapy every week of his life. Currently, he is scheduled for surgery in Texas. He will have significant tendon releases, muscle lengthening, and alcohol blocks (similar to botox) to provide relief to ever tightening muscles and resulting contractures. One of his hips is becoming particularly problematic.
We would have preferred to see his regular surgeon of the past 15 years who has been treating him since his infancy. However, due to Obamacare mandates, that doctor is no longer participating in any insurance plan and is fee-for-service cash only. He says the reimbursement rates are so low that he cannot afford to pay all of his expenses (hospital fees, staff, office space, malpractice insurance, and taxes) at that rate. We know this is accurate as our son’s last surgery of $30,000 was only “covered” by the insurance for $2,400. We were forced to seek out other options.
Both our son and my husband and I were quite distressed as starting over with someone new ensures all sorts of complications. So we prayed. Thankfully, a reasonable option is available, but not without undue stress, expense and complication. Fortunately(!) our son’s former surgeon had trained ONE other doctor in the entire country in the surgery that he invented. He is a surgeon in Texas and will be the one who will do his surgery (they are the only 2 docs in the country who do it) AND he is a participant in our insurance plan – so we should have continuity of care. We just have to go to Texas now instead of New Jersey. Now we will fly instead of drive, get a hotel room for 4 days instead of one and rent a car instead of drive our own. While we are beyond grateful to have this option – it is indeed an unnecessary hardship on top of an already complicated situation – and not without risks (i.e., flying after surgery, infection risks etc. that we have avoided all these years by being within driving distance).
All of this is so unnecessary – because of Obamacare. And who has benefitted?????? Not the doctor involved, not our son, and not us. How has this improved our medical scenario in any way? How has the promise of being able to keep our doctor been kept? How has this reduced costs or bent the cost curve down? The impact has not been minimized on this family and in fact has caused us actual harm … financially anyway. We hope that the skill of this new doctor is as amazing as the surgeon we are used to. All we can do is pray for God’s leading, provision and protection. but I’m one angry mom at having been forced into this position – and for what????
Kate in Virginia