Ten Years Ago: A Health Care Nightmare and a Child Birth Miracle
I hope everyone reading this message had a wonderful Easter with their family!
In my house, Easter is of course a wonderful and special holiday, but it also coincides with a momentous occasion: my near-death experience that culminated – joyfully and triumphantly – with the birth of my first son. I am sharing this story with you because it is this experience that has made me so passionate about health care policy and ensuring that everyone in Texas has access to high quality, affordable medical care.
Ten years ago on April 8, 2013, my life changed forever. After a week on bedrest for a condition that was never actually disclosed to me by my doctor, I returned to work in the Texas Senate. About a week before, Thursday, March 28, I was on the Senate Floor working my first session as a Senate chief of staff. I looked down at my feet and noticed they were swelling over my shoes. I was a little over 24 weeks pregnant (or so I had been told) at the time with our first child.
As most first pregnancies go, I thought this was normal. I called my OBGYN just to be sure and was told to call back if I got a headache. As a way of background, our son had been measuring a week to a week and a half smaller than normal at that point. I had a very irregular menstrual cycle and it had always been an estimate when talking about exactly when my husband and I had gotten pregnant.
After my call to my OBGYN, my husband and I went about our normal Easter plans. We went to church in Austin and drove to South Texas to celebrate with my family. By Sunday, I was a balloon, having gained over 20 pounds in water weight. The swelling was more than just minor, but again, I thought this was normal pregnancy swelling.
By Sunday, Easter, after driving home in a horrible rainstorm, I had developed a headache and generally felt bad. I went in to see my OBGYN on Monday and without explanation was told I needed to be on bedrest for a week. I immediately called my co-workers in the senate and asked to get a state issued laptop and work materials for the week so I could keep up with senate activity. I should have known this was NOT NORMAL, but I didn’t.
After a week of working from bed and truly not understanding the severity of my situation, I went back to my OBGYN who released me back to work with the only warning to “keep my feet elevated.” After a full workday, and after-hours work on committee hearing preparations from my couch, I prepared for bed. By that point, my body hurt. My back hurt. My head hurt. Something internally did not feel right. But, I was determined to go to bed and rest because I would feel better in the morning.
Thankfully, my husband insisted on taking me to the hospital. The rest was like a dream… or rather, a nightmare. Before I knew it, I was being taken from my small hospital in South Austin to Brackenridge in central Austin, a level IV Neonatal Intensive Care Unit. I still had very little explanation of what was going on other than the fact that my internal organs were not working.
By the morning of April 10, with less than 48 hours of steroid shots injected to help our son’s lungs strengthen,, a waiting room of grandparents and the senator I was working for and his wife, I was told that ready or not, it was time to deliver because my organs were in failure and my baby’s life was in danger. I remember, vaguely, the senator I was working for coming in to check on me and my response being one of concern that he was not in the committee he needed to be in to record an important vote, on legalizing gambling.
At 8:32am on April 10, 2023, we welcomed our first born, a boy, John Mark into the world weighing in at 1 pound, 4.8 ounces. In reading the neonatologists notes from that day, she estimated that I was not 26 weeks pregnant but likely somewhere between 23-24 weeks. While our tiny son fought for his life, I fought for mine (not something I share with a lot of people).
The next 122 days were a rollercoaster of emotions. These days were full of bad news, loud beeps, intubation, CPAP, an oscillator (the most awful thing I have ever seen), brain bleeds, NEC, being told our son would not make it through the night, bad feedings, As and Bs, and a pre-insurance coverage bill of almost $6 million, we were able to bring our baby home on an oxygen machine.
The next year was not any better. There was the $40/can formula, specialist visits, occupational therapy, horrific electricity bills because of the constant running oxygen machine, severe postpartum depression, PTSD…. It seemed to never end.
We spent every penny we had to give our son a fighting chance. We dealt with pre-authorizations, balance bills, lack of coverage for mental health care, stigmas with postpartum depression, isolation from protecting our son from germs, and so much more.
I tell you all of this to share some hope and empathy. Today, we have a healthy, happy almost 10-year-old son. I want you to know that I have been there. I am there. The health care system is complicated. There are good players (the nurses and neonatal doctors that saved our son’s life, the full-coverage health insurance state plan that helped to not completely bankrupt us), and there are bad players (the OBGYN who never explained what was happening and provided awful postpartum care, endless bills that filled our mailbox, and care costs outside of doctors and insurance).
I know this post is not policy related, but it is important. Often in our health care journeys we feel alone, unheard, and anxious. You are not alone. What is your health care journey? Share your story with us. Your voice matters. Legislators need to know what every day people are experiencing. Are you struggling to afford your prescriptions? Do you have piling health care bills? Are you struggling to get the access to care that you desperately need? If so, please click here and let us know.
As we come up to April 10, the 10 year anniversary of the birth of our miraculous blessing, we want to hear your stories. We want to help.
Sincerely,
Mia McCord
Executive Director
Texans for Affordable Health Care