June 24th, 2011
03:53 PM ET

Protecting Justin in the face of Medicaid cuts

This week, Dr. Sanjay Gupta examines New Jersey’s proposed cuts to Medicaid, a program that provides critical parts of the care the Genevieve Spielberg’s son, Justin, requires. For more on their story and the future of the federal insurance program, tune in to “Sanjay Gupta, M.D.,” 7:30 a.m. ET, Saturday-Sunday.

July 5, 2000, was going to be a magical day as my husband and I traveled to New York City for my scheduled C-section in great anticipation of welcoming the newest member of our family. Our 2-year-old son, Spencer, was going to be a big brother.

Little did I know that the same day our lives would change forever. After a normal pregnancy including tests, sonograms and an amnio, I delivered a baby boy who I only saw briefly, but during that time noticed his angulated thumbs which was surprising as my vision without my glasses is not the greatest.

To this day I remember saying, “What’s with his thumbs?” as the 90-degree angulations were not typical, but alas they whisked our Justin away and all hell broke loose.

Within the hour the doctors mentioned three possibilities and one of them was Rubinstein-Taybi syndrome. It was later confirmed that Justin suffers from this rare condition along with about 700 cases diagnosed worldwide.

Rubinstein-Taybi syndrome, RTS for short, is a mutation or deletion in chromosome 16 and like most syndromes can have mild to severe implications both physical and cognitive. To date, Justin has had 10 surgeries, the most recent just last week.

But that aside, he is one of the most special individuals I have ever met and truly brings out the best in everyone. With all of his challenges, he maintains the sweetest disposition and has exceeded all of our expectations, which is a relief since we were told not to expect much from him and the word “vegetable” was even used.

While Justin needs to be supervised 24/7, is incontinent and most likely will never live independently, he is a testament to the wonders of early intervention as provided by Children’s Specialized Hospital, a great school, i.e. PG Chambers in Cedar Knolls, New Jersey, and a team of doctors, therapists and specialists who go above and beyond the call of duty to ensure he maximizes his potential.

It is hard to believe that people like Justin were institutionalized at birth at one time, because of their poor prognosis. Of course, all mothers worry about their children and the smallest scraped knee is significant in the life of any child.

However, our biggest worry for our Justin is that he always be the best he can be, safe, happy and have access to appropriate medical care. This has been a challenge as it has always been time consuming to assemble a team of doctors and specialists who might be familiar with RTS, not an easy feat when the population is so limited and not every doctor can know about every condition.

So through an international support group, we have relied on fellow parents to direct us to specialists that follow their children and share strategies for dealing with challenging situations, which are many. Justin’s surgical interventions have taken us to multiple hospitals up and down the East Coast and none in our home state of New Jersey.

In light of the economy and cost cutting measures across the board, insurance issues are at the forefront of our worries. We are now confronting a major change in New Jersey’s Medicaid policy that will take place on August 1 requiring Justin to enroll in a Medicaid HMO.

I am concerned about how this change will affect Justin’s access to the medical care that he needs. While I understand changes need to be made, my concern is for children like Justin who have no voice and who must rely on their parents and government officials to ensure their medical needs are being met.

I have always said that while I am alive, my Justin will be fine, but I am ever so terrified for his future when I cannot advocate on his behalf and he will have to rely on government and social services to care for and support him. We are headed down a slippery slope and I can only hope that the decision makers of the greatest country in the world will protect this population that can’t protect themselves.

It is after midnight and I have just come back from a meeting to fight the construction of a cell tower around the corner from my house as a mother’s fight never seems to end. We protect our families, our community and hope that in turn they will protect our children.

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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.