Heart Wrenching… Know Your Rights!

It’s time… I’ve held my story in for six months, save for a few close friends and family knowing, and it’s time to break the silence of fear. The fear of repercussions that would come from sharing this with anyone who may not know me personally or understand the nuances of what happened. The fear of offending someone who holds a different belief system than I do. Fear of someone who may think I am ungrateful or unkind. Fear that I may get negative feedback or retaliation.

Despite all of those fears, I have to trust that speaking out and sharing my story could help a mama or daddy out there somewhere find the courage they need to stand up for themselves. I am writing this to you… so here it goes…(deep breath)…

This is my sweet baby boy. He is only 21 days old in this picture, and as you can see, he is hooked up to a half a dozen cords and things that beep. I took this picture to remind myself to tell this story someday when the trauma had worn off a bit. I guess today is that day.

It all began when my husband came home from work this past January looking very ill. After suffering at home for a day, he decided to go into urgent care. I stayed home with the kids. When he called and told me he tested positive for Influenza A and was on his way to the hospital for fluids, I panicked a bit but kept my cool.

I had never dealt with the flu. A bad cold, yes! But not the stinking, ugly, terrible, no good flu.

What I quickly discovered through google (yes, I google a lot) is that there’s not much you can do for the flu. There is a prescription drug that you can take that supposedly shortens the duration of the illness (and comes with some nasty side effects), but the flu is a virus, and it has to run its course.

After my hubby got home that night from the IV fluid treatment with his prescription bag in hand, the baby started to seem a bit warm to the touch. He barely had a fever, just 2/10ths above normal. But, as a mama who notices every breath and eye twitch, I watched him like a hawk and checked his temp about every 30-40 mins. After several checks, which didn’t result in anything consistent or worrisome, I called the after-hours nurse at his pediatrician’s office, to be sure I knew what to look for if anything were to change. She told me to continue to watch him as I had been and call if anything changed.

My mama bear instincts told me that he was fine and that even though he may have been exposed to the flu, he was breastfed, very strong, and going to be ok. All my antibodies would help him push through it quickly. #breastmilkisamiracle

The next morning I had a scheduled (totally unrelated) follow-up appointment with the pediatrician, and I had mentioned that my husband was at home with the flu. Without knowing what would follow, the nurse swabbed my baby.

The nurse left, and a few minutes later the doctor came in and informed me that my baby tested positive for Influenza A. He told me that he already called the on-call pediatrician at the hospital emergency room and that I had two choices. I could leave immediately and take my baby to the hospital without any stops or detours along the way, or he would have an ambulance take him for me. He informed me that they knew we were coming one way or the other and that it would not go well if I did not show up.

GUT PUNCH!

Holding back the deluge of tears, I pulled myself together and asked a few questions about why we needed to go to the hospital. The Dr. told me that they would need to monitor my baby since this was the flu in a baby under 30 days old just in case he was to take a turn for the worst. He stated that babies could go from seeming fine to death very quickly. That terrified me. I promptly chose Option A and left with my baby immediately. I was bawling all the way to the hospital. I called my husband, who was still at home sick as a dog and told him that I was ordered to go to the hospital with the baby, or else.

I arrived at the emergency room as an emotional wreck. I literally thought at that moment that my baby was going to die if I didn’t do exactly what I was told. I didn’t know how to handle it. Something in my gut was telling me to run in the opposite direction, but I did what I was told because I was afraid.

They quickly took us back, and I met with a nurse and the emergency room doctor. I was frantic thinking about life and death for my brand new baby, questioning my judgment, and thinking that if I hadn’t shown up, they would have come looking for me. Meanwhile, the doctor acted as he had never heard of me or why I was even there…like he had no idea what was going on. It did not instill any confidence.

Was I really supposed to be there? I ask myself that question regularly.

I told him that my baby had tested positive for Influenza A and that they needed to monitor him.

MONITOR, MY ASS!

What began was a cascade of events that all happened so fast it still feels like a complete blur.

They poked him about a dozen times trying to get blood from his tiny veins and even jabbed him with a HUGE needle into his spinal column to collect fluid WITHOUT my consent, not once, but three times!

It was a frenzy of people coming and going with needles, catheters, x-ray machines; you name it. Then, when they had tried (and failed) to get everything they needed from his tiny body, they shoved forms in my face to consent to the procedures AFTER they did them, even though I was telling them to stop over and over again. I was crying and telling anyone who would listen that I was completely uncomfortable with all this. I demanded that someone tell me what they wanted to do, why they wanted to do it, and what the potential risks were BEFORE I would give my consent.

I wanted to be informed, but they had no interest in my rights as the parent of my child. My baby was my responsibility, and they treated me like the enemy. They did everything they could to coerce me through fear tactics to comply or just disregarded my wishes completely.

I came into the hospital under the impression that they would watch him and make sure his fever didn’t elevate or cause concern because they had already had their diagnosis. It was the flu. Dad had, he had it, I probably had it…we knew the cause. But they treated him as if he was undiagnosed and potentially carried every possible illness known to humanity. In their words, “your baby is guilty until proven innocent.”

Finally, almost 2 hours later, the pediatrician who received the call ahead from our regular pediatrician came in and spoke with me. She assured me that no more testing would be needed, she was sorry for everything that had happened, and that they were going to move us to a room for the night before her shift ended so we could rest. They would monitor the baby from a distance in a safe place, but the worst was over.

After getting us settled in the room, nurses came in about every 20 minutes for something. Rest was NOT the order of the day. My baby was starving, but his “just in case” IV wouldn’t allow him to lay comfortably to nurse because it set off the alarms every time he moved. He was crying; I was crying. We were both a mess.

I just looked down at my sweet little baby boy and kept saying, “I’m so sorry, my sweet baby. I’m soo soo sorry; please forgive me….”

I called my husband four times an hour for moral support. He couldn’t be with me in the hospital because he was so sick himself. I was all alone, exhausted, and traumatized — the perfect prey.

After nearly a whole day in the hospital, with nurses coming in all day and night, I discovered that they were giving him antibiotics in his IV without my consent. They were just supposed to be monitoring his vitals. I clearly told them no antibiotics multiple times. I was willing to have the IV in place if they would allow him to show signs of not improving before they pumped him full of unnecessary antibiotics.

My rights were continually ignored. To them, I was just an annoyance who asked too many questions and wanted to meddle in things I didn’t understand.

After a horrible night, the newest pediatrician on call –with nine other staff members from all the divisions of the hospital– came to my room at 9 am to confront me about their need for yet another attempt to get spinal fluid. I had reached my limit of unnecessary intervention. The risk and trauma to my sweet baby boy was not an option.

With lips shaking and knees knocking, I said, No!

WHAT HAPPENED NEXT WAS UNREAL…
The doctor said that if I did not consent to the spinal tap to obtain a sample of spinal fluid to culture, my baby would be forced to stay for seven to ten days of IV antibiotics, even though nothing had cultured yet in his urine and blood tests. And that if I did not consent to the medicines and decided to take him home, that they would call CPS.

Wait! What happened to “just monitor him in a safe place”?

And CPS?!?!

It’s my right as the mother of my child to do what I think is best for his care, and by doing so, I would be reported to CPS????

In a culture where women can decide to end a life on the inside, now that mine was on the outside, I had no say in his medical care?

It didn’t make any sense.

If the medical staff knew his elevated temperature –which was gone almost a full 24 hours earlier–was from viral influenza, why did my baby need more antibiotics? They could not treat the flu because there is no such treatment. And I wasn’t willing to risk a potential life-long battle with his gut health, immune system, and other possible health repercussions purely on the excuse, “it’s procedure” or “guilty until proven innocent.”

Since they were already giving him antibiotics behind my back without my consent, how would the new spinal draw culture anyway? Something was not adding up.

Their concern for spinal meningitis or other secondary bacterial infections would have shown symptoms of ongoing fever, lack of desire to eat, excessive sleepiness, and more. None of which my perfect baby boy had. His temporary fever, which only lasted a couple of hours, was history BEFORE he was put on antibiotics without my permission. The ONLY point of concerned was his blood pressure, which was not getting a consistent reading. But guess what?! They discovered after nearly 24 hours that they were using the wrong size cuff. Seriously?! After fixing that issue, his blood pressure was excellent too!

Despite the barrage of nurse and doctor visits in the room continually jostling him, my baby was eating, sleeping, peeing, pooping, and behaving like the sweet little guy that he is. The flu couldn’t keep him down. Even the nurses were amazed at how “not sick,” he was. Hmmm.

Why all this intervention for my baby who wasn’t exhibiting symptoms, other than the ones they created by not allowing him to nurse and sleep?

When I decided to muster up the courage to exercise my parental rights, I told the doctor I was leaving. That’s when things took a turn for the worst. As if it couldn’t get any harder to stay strong through the countless threats of my baby dying, they had a legal official employed at the hospital approach me with threats of CPS saying that it was hospital policy, and telling me that if I left without continuing treatment they would also notify my insurance company who would not pay the thousands of dollars worth of medical bills we had already racked up.

I had multiple nurses and doctors come in to persuade me, and they even tried to talk to my father-in-law, who was visiting to get him to convince me to stay for more testing. These scare tactics went on for hours. It was intense, uncomfortable, and meant to wear me down so I would stay and comply.

I couldn’t do it. I was staring down at my healthy, happy baby boy who just wanted to eat and rest. I knew he was protected, and I had to get him out of there. I believed his heavenly Father was protecting his little body from the flu and had given me the strength to be his arms at that moment. I had to shield him from these people.

I signed the form that released the hospital and its staff from any legal ramifications from my decision and we left that afternoon with dozens of shocked and angry eyes following us out. The police came knocking on my door at 10 pm that night with an after-hours caseworker from CPS. The hospital had kept their word. With mace open and hand poised, the officer and CPS entered.

What I did not know at the time was if CPS visits after hours, they do not need a judge-signed court order to remove your child and take custody.

The after-hours caseworker tried to persuade me to go back to the hospital, saying they would leave us alone if we would go back in for the spinal tap. They already had my baby’s blood and urine for culture, and he had been on IV antibiotics and was showing no signs of illness.

What was it with their absolute obsession with my sons spinal fluid?

I was creeped out by the whole thing. I told them I was not willing to go back. I believe it was TONS of prayer that protected my baby boy from being taken that night. I have never been so afraid in my life.

Knowing CPS would be back again, I contacted my trusted midwife and explained what happened. She quickly got in touch with our assigned CPS caseworker to tell our side of things. She knows the lingo and has had experience with this particular hospital in similar cases. Meanwhile, the hospital continued to call me every 20 minutes on repeat all day long the next day trying to get me to come back.

I decided to call a lawyer because I felt like I was being attacked, and I needed to understand my rights. I called about a dozen offices to find someone who handled this type of case. I finally found someone. He answered on the first ring, and with grace and understanding, he talked me through it all. He was a Godsend!

He informed me that if I went back to the hospital with an open CPS case, and they determine my baby is still in need of medical care (even if he may not be), they have the right to assume all parental rights over my child, to administer any care the hospital deems fit, and not release him until they decide.

NO WAY!!!

Was all this coercion to return the hospital their way of medically kidnapping my child?

NOT MY KID!!!

We endured multiple visits to our home, countless calls, emails and texts, check-ups, cops parked outside our house, the stress of the unknown, the fear of someone having the power to take our kids, and more, but I am so thankful that I stood my ground. I would do it again.

I am so grateful for my midwife, who took charge and advocated so much of our case with CPS. (Thank you Sarah Dunn – you are amazing and I am so grateful for you!)

I am so thankful for being assigned a CPS caseworker who was interested in the truth and believed in my rights a parent. Thank you for closing our case quickly as completely unfounded and unnecessary.

I am thankful for my husband, Bart Shields, and my family, who supported me in my decision and stood up for me when I needed to trust my mama instincts.

And I am so thankful for my healthy baby boy who continues to thrive and grow every day with a smile on his face. He is perfect in every way.

I am sharing this story because I want moms and dads to know their rights when receiving medical care for their family. I want them to see that they don’t have to be bullied through fear tactics to comply. I want them to confidently stand up for themselves and their children when their instincts are telling them to, even when they are lied to and scared.

Some might ask if I am anti-hospital or anti-medicine. The answer is no. I am very thankful for doctors and nurses and the establishments where they work. What I am not ok with is bullying and scare tactics used to perform treatments and testing that are not medically necessary, without respecting my rights as a parent, and then calling CPS when they don’t get their way.

I did what I believed was best for my baby, and I want to encourage you to do what you think is best for yours. Go in with eyes wide open, educated, knowing your rights, and listening to your gut. Don’t let anyone bully you, especially about your health and your body!

Edited to add:
I believe that we are free to share our opinions as our first amendment right. My story was mine. I think there is a critical fact that I missed sharing above, and that is that when you leave the hospital as an AMA- against medical advice- they give you a “score” of 1, 2, or 3 depending on the severity of the AMA. We were given a score of 2, which meant that they did not advise us to leave but that my baby was in no immanent danger. If I would have been given a more serious score I most definitely would have stayed because then I would have felt more comfortable with the intervention, as the risk would have been been worth it. I hope you can understand my desire to leave even if you don’t agree. You are definitely entitled to your beliefs, which was the ultimate message in my story.

Hannah Shields on Facebook
August 7, 2019