Letter to patient relations

Someone at the patient relations department of the children’s hospital was willing to listen to the problems that led to our son’s illness becoming a misdiagnosis of child abuse. Below is the letter I sent to summarize problems with the medical care he received. Our case was assigned to a patient advocate who is supposed to investigate. We’ll see what happens…

Dear Sir:

You asked me to write a summary of events and what I think could be done. There is more to the story and more areas I would like to see improved but I tried to list the most important items.

What happened?

In September 2011, K, our four-month-old son had a seizure and was taken by ambulance to the emergency room. He was admitted to the hospital for testing where a subdural hematoma requiring emergency surgery was discovered. During K’s recovery he had strange blood test results and required a platelet transfusion and two packed red blood cell transfusions. For a while he was so anemic he developed a gallop in his heart. When a feeding tube was placed, he vomited blood and blood clots prompting an abdominal CT. No reason for the bleeding was found. Tests for bleeding disorders also came back negative.

K had health problems since he was born a 4 lb., 3 oz. twin at 36 weeks. The birth was an urgent C-section due to intrauterine growth restriction. K had feeding difficulties from birth with many incidents of apnea in the NICU and at 4 weeks when he was readmitted to the hospital. He was diagnosed with dysphagia and could only have nectar thick liquids. The weeks before his seizure K was increasingly reluctant to eat and finally only ate while sleeping. When we shared our concerns with his pediatricians we were always told that his weight gain was fine so don’t worry. There were warning signs that something was wrong.

When K was admitted to the ER he had petechiae bruises between his knees and ankles. This, along with the subdural hematoma, retinal bleeding and two innocent bruises that we told the child abuse expert about were enough for him to conclude that K’s injuries were highly suspicious of child abuse. When the child abuse expert met with us, I stated that we did not abuse our son and did not believe that anyone else who cared for our son had abused him. I asked what else could explain our son’s condition. The child abuse expert said a bleeding disorder was a possible explanation but the tests showed that K did not have a bleeding disorder. He said that the only other explanations for such an injury were a high fall or a car accident at least 30 miles-per-hour. Since neither of those happened, his only explanation was abuse. He could not specify when or how the abuse had occurred except that the petechiae bruises were caused by someone squeezing his legs. We told him that PICU nurses said petechiae bruises can be caused by blood pressure cuffs. We also explained that both times our daughter, A, had received a bruise she had a well-child visit the next day so her pediatrician had an opinion on whether they looked abusive. One of the bruises was on the side of her face and we offered to provide photos from the days before and after it occurred.

What went wrong?

Diagnosis from one piece of information. The first report concluding subdural hematoma also stated suspected child abuse. I don’t understand how a CT scan can indicate the method of injury or even that a subdural hematoma (with no bruising or bone injury) could be identified as trauma vs. disease. I don’t mean to imply that we should not have been investigated, but to conclude “suspected child abuse” based on a CT alone surely biased the process of diagnosing our son.

Patient history not properly investigated. In the police report the child abuse expert said that blood pressure cuffs cannot cause petechiae bruises. In fact, these bruises were caused by blood pressure readings done by the EMTs. Their report of K’s appearance at our house describes his skin as “mottled” with no mention of petechiae bruises. When he arrived at the ER, the bruises were there. We also witnessed the recurrence of these bruises numerous times when K’s blood pressure was taken. Our explanations of A’s bruises were also not investigated. The child abuse expert never contacted our children’s pediatrician or looked at the photos we offered to provide.

Some doctors were there to treat, not diagnose. We knew the child abuse expert’s diagnosis was wrong so we were working to find our son’s real problem. We asked his doctors if they had any other ideas of what might have caused K’s condition and we usually got one of two answers, an echo of the child abuse expert’s opinion or “it’s my job is to treat your son to make sure that he’s well and it’s someone else’s job to figure out what happened.” The doctors who said it wasn’t their job to “figure out what happened” must have assumed our son was abused because if he was sick, it was absolutely their job to figure out why! I was begging these doctors to help our sick son and they told me it was not their job because an expert in a field unrelated to his actual problem was in charge and only he could give us an opinion.

Some doctors did not answer direct questions. Three ophthalmologists looked at K’s retinas. The first ophthalmologist said something like “yes it’s there” and I asked what he meant. His response was that K had retinal bleeding. I asked what that meant. His response was “I’m not supposed to talk to you about that.” I asked if K will he be able to see, if he is blind, will he be able to read? He did not answer my questions. I asked the second doctor if she could tell me and her response was that she agreed with the first doctor’s conclusion. This was very disturbing.

Our children had full body x-rays without parental permission. I objected to the full body x-rays ordered by the child abuse expert the entire time we were in the clinic for the procedure. We knew the x-rays would unnecessarily expose our children to radiation but we didn’t feel we could take the children and leave because of the threat of foster care. I found out later that medical procedures without parental consent are not allowed without special approval. This approval was not obtained.

Patient relations failure (and recovery.) I contacted patient relations about 8 months after K’s hospital stay to discuss our case. I hoped our experience could be used to make improvements so other children would not have the same problems as K. The person I spoke to was defensive and belligerent. He said doctors cannot be right 100% of the time, etc. I don’t think the root cause is a doctor making a human error. I believe there are systematic problems and biases that make cases that resemble abuse, but are not, more likely to be misdiagnosed. I was disappointed that there was no interest in learning from our case. Recently I was encouraged to try again and was pleased to speak to a different representative whose only hesitation was that our case is over two years old. I appreciate his time and caring attitude.

How was he diagnosed?

Since we knew K had not been abused and no doctor at the children’s hospital was pursuing the real diagnosis, I had to figure it out myself. When we got his medical records I read every record, looked up every word, read research papers, medical journals, I read everything that I could find. In the end, I compiled a short list of evidence that convinced me that more blood testing was needed to see if K had a platelet disorder:

  • He required a platelet transfusion after surgery
  • He required two packed red blood cell transfusions after surgery + extreme anemia + heart gallop
  • He vomited blood and blood clots, no source was identified
  • The recurring petechiae bruises on his lower legs can be a symptom of a platelet disorder (found on mayoclinic.com)

K’s feeding clinic pediatrician referred us to a doctor in pediatric hematology/oncology. At the hematology clinic they took K’s blood pressure and, as usual, he got petechiae bruises. When the doctor saw the bruises he said K may have a platelet disorder because the bruises are a common sign. He ordered extensive blood tests and a platelet disorder was discovered.

In K’s three years he had to have about ten platelet transfusions to stop bleeding from bumps on the head. He wears a helmet to minimize these incidents. We are fortunate that during the three months he was misdiagnosed he had no injuries that could have been life-threatening without a platelet transfusion to help him clot.

What to do?

Don’t treat “abused” children differently from other children. When our son was correctly diagnosed with a platelet disorder the child abuse expert stuck with his diagnosis of abuse because “sick children can be abused too.” Our son was not abused, but the statement is true. The converse is also true: “abused children can be sick too.” Whether or not children have been abused, they still deserve ALL of their doctors’ FULL capabilities. All parents (suspected or not) should also be fully informed of their child’s medical status. It is cruel to withhold information from a parent when there is no legal justification to do so.

Require real evidence before diagnosing “suspected abuse.” Starting from the CT, with no other evidence, we think K’s diagnosis was made and all of the tests done were to confirm that diagnosis. For example, when our son vomited blood, we asked why it happened and the answer was that they didn’t know. The only test they did was an abdominal CT to check for trauma (i.e. more signs of abuse.) One doctor wrote in her notes that K’s blood tests were very strange and maybe something else was going on but no more diagnostic tests were done after he stabilized.

Update consent training. Training is needed on who can sign consent forms and when to ask for someone for help with decisions when there is disagreement about consent.

Learn from experience. I’m sure the hospital has quality reviews when a patient is harmed or there is a near miss. I think it is possible to decrease false positives (diagnosing abuse when not) without increasing false negatives (diagnosing no abuse when there is) with quality reviews of both types of cases. I am sure the doctors involved in the cases and their peers could provide more and better ideas than I.

I apologize for the length but it is difficult to write anything brief on a topic so personal and important. I’ll close with a comment about the non-medical cost of over-diagnosing abuse. Some people feel it is best to put any cases where there is the slightest suspicion of abuse through the court system and let it get sorted out there because if nothing happened it should all turn out OK. We did get our case dismissed before our hearing and no criminal charges were filed but it took six months, tens of thousands of dollars and a huge emotional and physical toll on our immediate and extended family. I guarantee you would not want the courts to sort it out if you or someone you love were one of those falsely accused.

Thank you so much for your time and attention.