1 in 100: A mother’s appeal for universal healthcare

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By Sunday, May 14 Viewpoints  5 Comments
The author's daughter, Cora, with her friend Lucas. Cora was born with Congenital Heart Defect.

1 in 100. This figure represents the number of babies born with a Congenital Heart Defect, or CHD, affecting more than 40,000 births in the United States each year. This figure also represents how Jimmy Kimmel and I are now inextricably linked: we are both parents to kids who are 1 in 100. For the moment, Kimmel is using his position in the limelight to shed much needed attention on this fact. The late-night television producer and host of ABC’s Jimmy Kimmel Live! announced last week that his son was born with Tetralogy of Fallot and was recovering from open-heart surgery. Billy Kimmel is 1 in 100.

My daughter, Cora, was 1 in 100, too. Nearly eight years ago, a perinatologist paused a gloppy ultrasound wand on my swollen abdomen and discerned that my unborn baby would be born with Hypoplastic Left Heart Syndrome (HLHS), just half a heart in physiological terms. What ensued was a journey fraught with uncertainty and stress, none of which was related to healthcare: we lived in Massachusetts, after all, a mere 130 miles due west from Boston Children’s Hospital and, despite my ex-husband’s seemingly paltry teacher’s salary, we had excellent insurance. Not to mention MassHealth, for which all three of my children qualified because of Cora’s pre-existing condition, picked up the rest.

My daughter’s short life began and ended with President Barack Obama in office; the Affordable Care Act, or “ObamaCare,” was a godsend for our family. When it was signed into law on March 23, 2010, my daughter was a scant four months old. She had already spent two weeks as an inpatient at BCH, following her first open heart surgery, and we found ourselves weeks away from her second. The ACA, which included provisions to take effect between 2010 and 2020, promised quality, affordable healthcare for all Americans — even those with pre-existing conditions — even Billy and Cora. While I had plenty to worry about, I could rest assured knowing that Cora would not face discrimination due to her pre-existing condition; I did not fear her being denied treatment or coverage due to her health status; her treatments were not contingent upon remaining within annual or lifetime limits; and we were not at risk of bankruptcy, more than 60 percent of which can be attributed to medical costs.

Cora and her friend Tara.

Cora and her friend Tara.

Our family’s journey supporting someone with a pre-existing condition spanned nearly seven years, and we never saw a medical bill. Cora spent months as an inpatient, often in the ICU, where the daily rate of $2,200 rivaled some of the swankiest hotels in the world; she had a G-tube, a pacemaker and a central line all while living at our home in rural western Massachusetts; she received physical, occupational and speech therapy to support her development; she and her sisters enjoyed music therapy, art therapy and massage therapy as an escape from reality; we were provided with a pulse oximeter, blood-pressure machine, digital scale, feeding pump, and a hospital-grade breast pump to support our care of Cora while at home; we paid nothing out of pocket for the more than 19 prescriptions and injections she needed daily; we lived through five open heart surgeries; Cora received a heart transplant. I never once went to the mailbox and found a bill, and MassHealth — our secondary insurance — caught all the co-pays.

Cora and friend Lucas.

Cora and friend Lucas.

My daughter died in September 2015, just three months shy of her sixth birthday. I don’t have to worry about Trumpcare stripping my family of the ability to deal with a potentially debilitating diagnosis — read pre-existing condition — but Jimmy Kimmel does. And for that reason alone, I don’t envy him. Not one bit.         OK, I am mildly jealous of Kimmel’s built-in platform for spreading awareness about CHD — and the fact that his child is alive and thriving — but I don’t envy Jimmy Kimmel’s position: he is going to have an uphill battle parenting his son under the Trump administration, and the sheer terror of cardiac anomalies, open-heart surgery, and the general stress of parenting a newborn might possibly pale in comparison to the healthcare changes being made in Washington. Kudos to you, Jimmy Kimmel, for shedding light on this important topic. Soldier on all you beautiful little souls who are the literal 1 in 100; may each and every one of you, and your families, know that the battle you face every day is a battle worth fighting for. You are worth fighting for. And every single one of you deserves a monologue.

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5 Comments   Add Comment

  1. Deb Koffman says:

    thank you hannah…a beautiful, heart-full, article…may all parents, children, humans, receive the care they truly need…

  2. Donna Moore says:

    You’re amazing, Hannah. May your message continue to make a difference.

  3. James M. says:

    What would Julia Ward Howe say about the opprobrium that currently resides at 1600 Pennsylvania Avenue?

  4. Rebecca Gold says:

    Thank you for sharing your story. I’m so sorry for your loss.

  5. Alice Boyd says:

    Thank you Hannah for putting a face (particularly Cora’s beautiful face) on an issue that so many can’t fully relate to until their family faces a medical crisis.

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