If your concerns are being ignored, run, don't walk, to another doctor

Body: 

Sometimes healthcare hurts more than it helps. Consider the case of Hannah, a baby born with several serious medical issues.

The problem that put Hannah in intensive care on and off for most of the first three months of her life was that she couldn't seem to keep anything down. Because her mother, Tiffany, did not produce enough breastmilk to meet the baby's needs, Hannah was fed a combination of formula and breast milk. She vomited up almost everything after every feeding.

One rare weekend when Hannah was home from the hospital, Tiffany tried an experiment. She gave Hannah only breast milk. Miraculously, Hannah kept down every feeding for two whole days. But on Monday, Tiffany had to start feeding the baby the formula that had been prescribed for her to give her enough calories. Hannah promptly started throwing up again.

Back in the hospital, Tiffany reported on her experiment. The doctor said, "That's impossible. The formula is hypoallergenic. Nobody has a problem with this formula." The doctor wanted to operate on Hannah to make it impossible for her to vomit ever again so that she would keep the formula down. Tiffany refused, appalled at the idea of forcing Hannah's body to retain something that it was so violently rejecting.

Tiffany's relationship with Hannah's doctors and nurses went downhill from there.

Tiffany was soon ordered to leave the feeding to the nurses. Then they wrote in Hannah's records that Tiffany had failed to feed her. They wrote that Hannah was tolerating the formula well, when in fact she continued to vomit as before.

When Hannah's feeding tube was replaced, Tiffany saw from the markings on the new tube that it had been inserted 6 centimeters into Hannah's belly. She was alarmed because the previous one had been inserted 2 centimeters. She repeatedly asked over several days if the new tube had been inserted too far. Her questions were brushed off.

Hannah had stopped vomiting once the new tube had gone in, but after 10 days an X-ray showed that the tube had been inserted so far that it went past Hannah's stomach and was dumping food directly into her intestine. She was being starved because food bypassed her stomach and left her system too quickly; this mistake also could have destroyed her intestines.

No one apologized.

When a replacement tube was inserted correctly, Hannah promptly started vomiting again, a fact omitted from her medical records.

When Tiffany reported after the next time Hannah was discharged that she was still vomiting, she was told, "If you can't feed your child, maybe you should put her in a nursing home so someone else can do it."

Tiffany asked that the GI (gastrointestinal) specialist be consulted about Hannah's feeding program. They told her that he had approved it. Later, she found out that he had not been consulted; he was very upset with the course the treatment had taken.

Tiffany wanted to find a way to get more breast milk for Hannah. Hospital policy strictly prohibited the use of breast milk donated by other mothers. Their milk might contain residues of medicines they were taking or other harmful substances. Tiffany tried to get the doctor to help her get banked human milk, which has been tested, processed, and sanitized.

The doctor refused, saying, "That's not an option. It's expensive. You can't afford it." Because the milk required a prescription, his refusal prevented Tiffany from getting it.

Tiffany was told that she was the reason that Hannah was failing to thrive. The next time Hannah was discharged, Tiffany carried her into the house only to find that she had a phone message from a social worker. The hospital had reported her for child endangerment, and the social worker had to come to see if she needed to remove not only Hannah, but the other three children Tiffany and her husband had as well.

By the end of her visit, the social worker was impressed with the very careful records Tiffany kept of Hannah's complicated medication schedule and feedings, as well as many other aspects of Hannah's care. She told Tiffany that the hospital should never have reported her, because there was not a shred of evidence that Tiffany was anything other than an organized, careful, loving mother.

After that, Tiffany decided to take Hannah to a different hospital that was much further away. The doctors there quickly detected that Hannah could not tolerate corn, the common ingredient in all of the formulas she had been given. They concluded that she needed banked human milk.

Hannah then began a long, slow recovery from the abuse her system had taken for the three months during which she was fed every three hours around the clock with food that made her violently ill.

Occasionally, as in Tiffany's experience, people run into a wall when dealing with healthcare providers, despite trying hard to communicate clearly. Three important clues can help you avoid nightmares like Tiffany's and Hannah's.

Sometimes, doctors and/or nurses may:

1. Deny the facts.

2. Ignore serious issues that you raise.

3. Blame the patient (or family member). In Tiffany's case, the doctors and hospital staff did not take the position, "We haven't figured out your baby's problem yet." Instead they took the position, "You are a bad mother."

If you experience any of these troubling red flags, consider finding another doctor or hospital as quickly as possible.

Elizabeth L. Bewley is President & CEO of Pario Health Institute and the author of "Killer Cure: Why Health Care is the Second-Leading cause of Death in America and How to Ensure that It's Not Yours." To tell Elizabeth your story or to ask her a question, write to thegoodpatient@pariohealth.net.

Author: 
Elizabeth L. Bewley