My journey into motherhood began 11 years ago. My husband and I had been married for two years, and we got the surprising news 12 weeks into the pregnancy that we were having twins. Everything was great until I went into premature labor at just 24 weeks. My placenta detached and I was hemorrhaging. I was rushed to the hospital and my children were born two hours later. At 16 weeks early, they were classified as micro-preemies, weighing in at 1lb 6oz and 1lb 14oz.

It’s hard to imagine what a 1lb baby looks like. The boys were smaller than a beanie baby. Their skin was translucent, still covered with a downy hair, their eyes were fused shut, they hadn’t developed cartilage yet so their ears were just little flaps of skin, and their thighs were about the size of my pinky finger.

We spent the next six months in the Nicu (Neonatal Intensive Care Unit), and during this time ran into many prematurity-related medical issues. Failure to thrive, brain hemorrhages, retinal complications, heart defects, cerebral palsy, blood infections, hernias, rickets, jaundice and severely compromised lungs to name a few.



Ethan at one week old. Says Sinconis: ‘Touching through the isolette window was our only contact. I would sit all day on a stool with my hands on him for comfort, and took turns between each boy with my husband, Mom or Dad rotating with me. I never left the hospital, and I always had one of the three of my family members with me.’ Photograph: Jen Sinconis

It had never occurred to me the financial repercussions someone could encounter because of an ongoing medical situation. We were a middle-class family with college degrees and solid full-time jobs in marketing and construction management. We owned our house, had very little debt, a savings account, retirement accounts and comprehensive medical insurance. We traveled once or twice per year to exotic locations, we had a rescue dog named Jameson and were enjoying being responsible adults and building our lives together.

We thought we were prepared for anything, but never could have had imagined this situation. In addition to the extreme guilt and anxiety I suffered during our months in the hospital, we also had the incredible shame that comes with not being able to pay your bills. Many of the procedures my kids needed were not covered by our “comprehensive” medical plan. Our Nicu room was billed at $10,000 per day per child, and that was just for the room. Nurses, doctors, specialists, tests and drugs were additional. Our insurance covered one x-ray per day, and most days required multiple which would bill to us directly. One of our vaccines (needed for three years) wasn’t covered at all, and it was $3,600 per month.



By the time the boys hit 18 months old, we had exceeded the cap on our $2m insurance policy and incurred $450,000 of medical debt. We liquidated our retirement accounts, saving account, sold everything we owned to try and pay it off. When I realized our savings weren’t enough, we listed an estate sale and opened our doors to crowds of Craigslist shoppers telling them “everything is for sale”, and let people wander our house and offer us dollars for the furniture and collectibles we had worked so hard to acquire. I remember someone offering us $300 for our master bed, and I accepted. At this point, who needed a bed to sleep on.

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Unfortunately, that didn’t cover it all, and we ended up claiming bankruptcy. We were rejected for prescription refills, and my kids ended up back in the hospital with respiratory illnesses that could have been prevented. At one point my pharmacist told me that if we cancelled our insurance coverage we would qualify for financial assistance, but before the Affordable Care Act was initiated that would have classified them with “pre-existing conditions” and they would never be covered by health insurance again. We had to keep paying the premiums for the insurance that no longer covered anything, while trying to pay for everything out of pocket. All of this while taking care of two very sick, very fragile children.

The Obamacare changes to lifetime caps and pre-existing conditions would have changed our story dramatically. The pre-existing conditions clause forced us to remain in the insurance pool, while the lifetime caps excluded us from coverage. We fell into a gap that very few people hit, but it financially destroyed our family and restricted the care we were able to get for our children.

When Trump was elected I cried myself to sleep, knowing that one of his first agenda items would be overturning the Affordable Care Act. If lifetime caps and pre-existing conditions ever become a limit to my children’s access to healthcare, I have no idea how we will navigate this system. This system is not set up to support families with catastrophic medical bills.

We lost our house, our cars, our possessions, and most importantly, our dignity. The grief over the new baby experiences that I would never have, the guilt over not being able to carry my boys to term and the anxiety of their daily life-or-death situations were crushing; but to add the stress of losing our financial security and the self-esteem that comes with it was almost more than I could bear. I was naive, and didn’t realize how quickly you could lose everything. And the worst part was that my children had to suffer because of our insufficient healthcare coverage system.

Eleven years later, we have worked hard to overcome the effects of prematurity and the financial disaster that followed. Aidan and Ethan are both now healthier than any doctor predicted. They are smart and funny and caring, and the absolute joy in my life. Aidan is a Lego enthusiast, and Ethan has a love for languages and studies Japanese and Mandarin. And amazingly, our family is still together.

Being a parent to a sick child is incredibly tough. It stresses the limits of marriage and friendships and personal strength. It’s heartbreaking that some parents will have to deal with critically ill children, but no parent should have to worry that they cannot afford the medical care to keep their child alive and help them thrive.