At the heart of the matter

Medicaid is often a lifeline for children with special needs and their families

It was toward the end of November – I was sitting in the billing office of A.I. duPont Hospital for Children in Wilmington – my home at the time. I left my baby’s side to answer some questions regarding health insurance. Up until Matthew’s birth, all I knew about health insurance was that when I took my kids to the pediatrician, I paid a copay, and that was it. We were all on my husband’s plan, and it was a pretty good one.

But now we were at duPont, and the doctors there weren’t in network, so I was pretty concerned because we would be responsible for 20 percent of the cost for out-of-network care. And since my baby just had heart surgery ― well, I was pretty certain that fee schedule wasn’t on par with say, a tonsillectomy.

My baby had Trisomy 21 (an extra chromosome), and a fairly common medical complication in babies with Down syndrome (found in about 25 percent of births) is atrioventricular canal defect (AV canal defect) – or, as I came to understand it, a big hole between the chambers of Matthew’s heart.

Matthew had the surgery to correct the defect two weeks prior to my visit to the billing office. He was only 16 days old. He came through the surgery beautifully ― is surgeons couldn’t have been more pleased. And then it happened. When the doctors removed the ventilator, Matthew “crashed” – his heart stopped and the doctors had to open him up again and then put him on ECMO (extracorporeal membrane oxygenation, a heart-lung bypass machine). Matthew was on ECMO just under 24 hours, and then intubated again, unable to breathe on his own.

So I sat that office, my mind whirling like a tornado with thoughts of ECMO, intubations, surgeries, Matthew’s chances of survival. The woman who requested to see me stepped away from her desk for a minute – allowing me a glimpse of her computer screen – and the tally so far to date. A mere $500,000 – out of network.

I nearly needed intubation myself. How in God’s name were we going to pay that? Before my mind started racing too fast, the woman returned. She must have noticed the grayish tint that took over my face because she grabbed my hand. “Oh honey,” she said, “that’s not a bill you’re seeing. That is the cost of Matthew’s care so far, but you aren’t responsible for it.”

That can’t be possible, I said, because the hospital and doctors are out of network and we would be responsible for a percentage of the cost.

“But,” she said, “Matthew is covered by Medicaid.”

A couple of days after that visit to billing, Matthew was still unable to breathe on his own. The head of cardiology at the time, Dr. William Norwood, was opposed to trichotomies for respiratory complications because they are too invasive. He preferred a negative pressure ventilator, which enables a person to breathe when normal muscle control has been lost or the work of breathing exceeds the person’s ability. So, Matthew spent the next month or so in THE IRON LUNG. (Grammatically correct or not, this term should always be in “shouty caps,” accompanied by ominous music in the background.)

For the better part of a month, Matthew lived in that contraption – and most happily, I might add. Thankfully, we have a happy ending to the story. (Sunday afternoon, Matthew was tearing up the court at The Fellowship House of Conshohocken during his basketball game for Special Olympics.)

I never did find out what the overall cost of Matthew’s care was – almost three months in the cardiac intensive care unit (CICU) of the hospital, a day on ECMO, a month in the IRON LUNG, medications, therapies. Had Jimmy and I been financially responsible to just a percentage of that bill – well, I’d probably be writing this from the poor house, so to speak.

Here’s the irony – if Matthew had the correct number of chromosomes, chances are his heart would have been fine. But because Matthew had an extra chromosome, thereby causing him to have Down syndrome, he automatically qualified for Medicaid because he is considered disabled. (Don’t tell him that.)

And now, there’s a real and present danger to Medicaid. And there’s a real and present concern for the approximately 77 million people who qualify for Medicaid because President Donald Trump, in a bit of a clean sweep of Obamacare, will “tweak” the program. A block grant would put a limit on the amount of federal money Medicaid receives and shift the bulk of the responsibility on to the states. In Pennsylvania, about 2.8 million people benefit from Medicaid, and according to Kaiser State Health Facts, about 25 percent of those beneficiaries are classified as disabled. According to U.S. Sen. Bob Casey’s office, approximately 700,000 people with disabilities are on Medicaid in Pennsylvania.

Casey, a Democrat, is determined to protect programs like Medicaid, and to put a personal touch on the importance of the issue he’s has asked Joe McGrath, a resident of Lafayette Hill, to join him for President Trump’s Congressional address on Feb. 28. McGrath and his wife, Rita, are the proud parents of Michelle, a distinguished scholar athlete with a 4.0 GPA, and Maura, now 17, who was diagnosed prenatally with Down syndrome. Maura was 14 months old when she had open heart surgery and in the intensive care unit for a month.

“Anyone who’s going to try to block grant Medicaid is going to have a fight against me because I’m going to go very hard against that and do everything possible to stop that from happening,” Casey said last week during a phone interview. “So, having Joe McGrath as part of that team to help us stop block granting of Medicaid with be a great benefit to our cause.”

Joe McGrath retired from Philadelphia Gas Works after 29 years after complications from Parkinson disease made it impossible to continue his career. He served six years in the Marine Corps, mostly reserve duty (between 1980 and 1986) and said exposure to contaminated water when he was stationed at Camp Lejeune has been ruled “presumptive for Parkinson’s.”

“Going to the joint session of congress is a true honor as an American,” McGrath said. “Going as a guest of Sen. Casey makes it a greater honor. He is a true champion for the vulnerable.”

For families like the McGraths, and the Rodgerses, Medicaid is not just a benefit – it’s vital to financial survival and medical wellbeing. So, when President Trump talks about fighting for the “little people,” I really hope he recognizes the big problems we little people could face with his “tweaks.”