When the Medical System Fails.

My daughter was practically perfect when she was born at 40 weeks 3 days. She breastfed immediately, easily, and I had no pain. She did wonderfully her whole first night in this world. No problems and no hint of any issue.

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The next day we were about to leave the hospital to head home. All that was left to do was run some routine/standard tests. The nurse wheeled her out of my recovery room. My daughter never came back.

An hour later I found out that she was transferred to the NICU. She was administered antibiotics and caffeine, before getting my consent. The doctors said that the oxygen levels in her blood were too low. (She was “desaturating”.) Either this was the result of the vitamin K shot, or I suspect they may have given her the hepatitis B shot against my wishes when they took her back for testing – because absolutely nothing was wrong with her until they took her from me.

The doctors had no idea what was causing the issue. She began turning a greyish-purple when I would nurse her and she couldn’t keep her oxygen levels up, even with oxygen flowing at 100%. They wanted me to stop nursing her. I wasn’t ok with that. So they had me scheduled to do it every 3 hrs. I nursed on demand as much as I could.

I was terrified I was going to lose her. Several days went by with no answers and she was still desaturating down below 70%. They found out she didn’t have an infection, and therefore the broad-spectrum antibiotics were unnecessary and she was taken off of them. The caffeine was given because that’s what they do with premature infants for lung and brain development – except, she was a full-term baby and her lungs and brain were fully developed for her age, not to mention the fact that she has been breathing just fine on her own for a full 24 hours prior.

They ran so many test$. Nothing came up.

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Then I began to notice she was having reflux. At that point, the doctors wanted to put her on two different reflux medications at twice the appropriate dosage for her weight, for each medication. (We didn’t know the appropriate dosage until my husband and I researched the medications.) Then I was informed that they wanted to give her hypertension medication for high blood pressure.


The nurses and the NICU doctor explained to us that we were going to have to keep our daughter home and not go out in public in order to protect her from catching diseases since she was immune compromised. I mentioned we had already planned a trip to Disneyland for four months later. The NICU doctor laughed and said, “Well that’s not going to happen.” She said that I shouldn’t take her anywhere, at all, ever. She told us that our daughter would have to be hooked up to a machine to monitor her breathing, and that she would likely catch every disease she came into contact with and be sick all the time… that she was already sick and that we would need to avoid any additional potential illness. The road ahead would be scary and difficult.

So we discussed the machine. While hooked up to the ten-pound machine, if my daughter stopped breathing for more than 20 seconds, the alarm on the machine would sound – very loudly, and indicate that she was experiencing apnea. At that point I mentioned to my husband that it’s going to be hard to have such a loud alarm going off in our room with my older son still sleeping in our room also. The doctor smiled and said, “Ha! Yeah, he’s definitely not going to be able to sleep in your room anymore,” as if she was happy to disappoint us. I was astonished at her lack of professionalism. Her tone was incredibly rude and insensitive, as she made it a point to make it known that she looked down upon our parenting decisions.

The next day we began to suspect that the caffeine was potentially causing my daughter’s reflux and high blood pressure. The NICU doctor didn’t appreciate me questioning her decisions. She told me that the caffeine couldn’t be causing reflux or hypertension and that she spoke with her colleague who is a pediatric nephrologist who said that caffeine has never caused high blood pressure…

I then asked if my daughter’s blood pressure had been high from the beginning, before interventions. “Yes, it’s always been high,” she said. Let’s just say we were skeptical of her answer, and later that day my husband decided to ask a nurse to write down my daughter’s initial blood pressure reading for us, and surprise – it wasn’t high. At all. It was completely normal and within the right range.

At that point we decided to make some major changes. We had previously felt like we were at the mercy of these medical professionals – to trust and follow their advice, to do whatever they believed was best – because they knew better than we did. Unfortunately, as we researched these medications and listened to our instincts, we found out how naive we were to fully trust them with our daughter’s health.

We told the doctor that we were going to stop giving her caffeine, and that we were not going to give her any more medicine for hypertension. The NICU doctor was visibly incensed that we put our foot down and told her what we were going to do, moving forward.

My daughter was not given caffeine that day and she wasn’t given hypertension meds. By that night, her blood pressure began to normalize. She stopped turning purple when I would nurse her. She was finally stable enough to go home, after having spent two weeks in the NICU. The doctor never stopped by to send us well wishes before we left, nor congratulate us on figuring out a solution to help our daughter by improving the condition of her health. Her ego was bruised. She was caught in a lie. She was wrong. She wouldn’t admit it or face us, and it’s unfortunate because her behavior played right into the bad stereotypes.


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My daughter went home with an alarm that we didn’t feel was necessary or appropriate. It did not measure oxygen saturation. It measured apnea, which wasn’t the issue. She was hooked up to it for one week and it never legitimately alarmed. But, the pediatrician wanted me to keep giving her reflux meds. So we went to a pediatric gastroenterologist. The pediatric GI confirmed that the amount of meds she was advised to take was absurd and that she didn’t need so much. He cut her dosage down to one reflux medication at half the dose recommended by the NICU doctor (down to about one fourth of the original dosage she was being given). After doing some reading, I ended up cutting out dairy and other foods to help with her reflux. Within two weeks, she was no longer having a problem.

So, by the time she was a little over 2 months old, she was doing really well. She was exclusively breastfed. No more reflux meds. No more caffeine. No hypertension meds. No sleep apnea machine. It was as if she had never been admitted to the NICU.

What would have happened had we continued to follow what the doctors had advised us to do? She would have been taking caffeine, two reflux meds at twice the appropriate dosage for her weight, and hypertension medication, daily. Considering the fact that the caffeine was causing her hypertension and potentially her reflux as well, their plan was basically just a great way to keep my daughter sick in order to make money for the pharmaceutical and medical device industries.

Four months later, we went to Disneyland, and my daughter never got sick. Don’t let a doctor tell you what is. Listen, but trust yourself. Trust your instincts, and always do your own research.

2 comments

  1. OMG! This is almost exactly like our story with our daughter!! Born perfectly healthy – no issues at all.

    Denied Hep B and everything.

    Then, they took her for her screenings to come home and suddenly she couldn’t pass the ox sat test and had to stay and go through countless tests. They never found anything wrong with her. Finally, she was able to go home when she was 2 weeks old.

    Later, I was looking through her hospital paperwork and it said she had been given Hep B even though we refused it! I’m certain that’s what caused the NICU stay. 😦

    Like

    • Wow. That is horrible and so upsetting that they would give her that shot when you specifically denied it!! Thank you for sharing your experience. I tried to go back to get hospital records confirm whether or not my daughter was given hepB and there’s nothing conclusive, so I will never know for sure. But I have heard many stories of nurses giving shots when they were denied, and my older son was also given a shot against my wishes.

      Liked by 1 person

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