Tava Reese

English
Essay
8/8/2021

When do you know as a parent when it is okay to advocate for your child or when to take

a doctors word for it?

I know my original paper idea was on music therapy but I decided to go with medical

misdiagnosis instead. A month ago my fourteen year old son collapsed with a heart rate of 197 and an

oxygen count of 42 and then three days later it happened again. Since then we have seen six different

doctors and have had countless tests and still have four more tests scheduled over the coming two

weeks. Every doctor that we have seen has told us basically the same thing except for one. When do

you know as a parent when it is okay to advocate for your child or when to take a doctors word for it?

In 2005, after having two very healthy girls, I had a late term miscarriage. It was extremely hard

and my husband and I decided to not have any more children. It was early in 2006 when I went in for

my appointment that my doctor informed me that I was pregnant. From four weeks into my pregnancy

until my son was delivered I was sick. We had to hire a live in nanny to help with the girls and to help

me do everything that involved me getting out of bed. I couldn’t drive, walk or even shower by myself,

it was humbling but worth it. At 36 weeks pregnant I started having medical complications and the

doctors told me that I would have to be induced or I might lose my child. So they broke my water and

induced my labor. My son was born the next day, November 6, 2006 after a very rough delivery. At

first everything seemed fine, he was deemed a healthy 8 pound 4 ounce baby. It wasn’t long after that

things went south. My son was born with a cyst on his tongue that prevented him from latching for

feeding. So over the span of two weeks we had a nurse with us trying different bottles and nothing
would work. At two weeks old my son had lost almost three full pounds and could barely get any

nutrition. They cyst was shrinking so with each new day we had a little more hope. It was about three

weeks in when the doctors realized that my son was also allergic to baby formula, further complicating

things and we had to switch to a prescription formula that was soy based and cost an astronomical

amount that our insurance refused to pay for. But we had found a solution and things got better. For the

next two years my son had a normal life. He was extremely intelligent and was always in the top 90th

percentile in height and weight. In early September 2008 we had a huge storm that knocked out the

power to our house. It didn’t take long for my son to start coughing and weazing, we called the squad

but because of the storm they couldn’t get to us, so I rushed him to the nearest hospital. We got checked

in and they told us to wait. Over the next two hours my son deteriorated and I had to carry his now

almost lifeless body to check in and scream at the nurse. A doctor came out to help the nurse but when

he noticed my son he scooped him up and rushed him back. My son barely had a pulse and they

couldn’t get an oxygen count on him so he was life flight-ed to Dayton Children’s hospital where we

would spend the next 5 weeks. My son was diagnosed with asthma and after 5 weeks we got to go

home because my sons condition stabilized. That first year with asthma my son was life flight-ed once

and had to be transported via an ambulance nine times. A year later while swinging at his grandparents

house the chain of the swing broke and my son hit his head. He was unconscious and was taken via

ambulance to Dayton Children’s hospital. There they did an MRI of his brain and found a mass on his

front left hand side that they said had been there since birth, they call it a sub-arachnoid cyst. Over the

following few months my son went through several tests and scans and they determined that the cyst

was inoperable because they main blood vessel that supplies the brain ran directly through the center of

the cyst. No doctor here in Ohio would operate and gave us warning after warning. My son now had to

live like every day might be his last. If he bumped his head and the cyst ruptured then he would most

likely not survive. During this time we were still having issues with his asthma and so to try and

understand what was triggering it they spun his blood and realized that my son was born with genetic
high cholesterol. At that age there isn’t much they could do except restrict his diet. So on top of asthma

doctor and family doctor and a neurologist we now got to spend a day every week visiting a nutritionist

and logging every thing he ate and drank. For the next two years we tried to give him a normal

childhood despite spending a ton of time at the hospital, visiting specialists and having MRI’s done

every few months to make sure the cyst didn’t change or rupture. At the age of 5 my son had another

severe asthma attack that landed him back in the hospital and back on steroids but this time wasn’t like

the others. His little body had been on steroids one too many times and this time sent him into kidney

failure. Over the next two months my son would remain in the hospital while they treated his asthma

and got his kidneys to work again. At the time they talk about life expectancy and transplants but we

knew he was a fighter and would overcome this too and he did. His kidneys slowly started working

again and they got him healthy. They tried to put him on singular as an everyday preventative but he

was allergic so we treated our home like a hospital and limited where we went. He couldn’t go

anywhere near smoke so no birthday candles for him, no restaurants where people would be outside

smoking or even sit beside a table that would have candles on their cake. Because of his cholesterol we

also had to limit our girls from going to parties that we would have to attend because my son couldn’t

have what they were having and it would cause him to get upset which would trigger an asthma attack.

Needless to say when it comes to medical issues my son is the anomaly.

So a little over a month ago, on Thursday evening my son started seeing a physical therapist

friend of mine who is also a nutritionist and a personal trainer. During the first ten minutes of light

warm up on an elliptical my son collapsed. We took him to the emergency room where they took blood

work, did an EKG and told us he was fine and sent us home. We followed up with our family doctor on

Friday and she agreed with the emergency room doctor that he was fine. On Sunday my son went to see

my friend again and within fifteen minuted my son collapsed and was unresponsive. It took four

smelling salts, a sternum rub and bending his fingernail backward to get him to wake up and tell us his

name. Another EKG was done, more extensive blood work and three doctors looking over his history to
give us our options. In their opinion my son has some kind of underlying heart condition or the cyst on

his brain could be causing issues. We were referred to a pediatric cardiologist and a new pediatric

neurologist with the three doctors agreeing that we needed an echocardiogram, stress test, MRI and

possibly an electrocardiogram.

Our first and only appointment with the pediatric cardiologist was a nightmare. The doctor

comes in, asks my son what sports he plays, sits down and takes his mask off. He then asks my son

what it felt like during the second episode. He then turns to us and said that it was most likely just a

little fainting spell due to his soda consumption. I inform the doctor that I drink one cup of coffee a day

but my children do not get anything that has caffeine or sugar in it because of a family history of

diabetes on both sides of the family. He then accused my son of sneaking energy drinks since I was too

strict which my son informs him that he doesn’t. I then interrupt the doctor and explain that my son is

always at home. He is a super genius and has a hard time making friends and at one point was even

tested for aspbergers because he is socially inept. He at this point hasn’t looked at my sons medical

history, family history or my son who is sitting directly in front of him. I at this point am very frustrated

and just start telling the doctor about his history with genetic high cholesterol and the doctor gets up

and walks out mid conversation. He comes back a few minutes later with a piece of paper and starts

getting mad at me because his chart says my sons last blood test with numbers was back in 2008. I

stated that in 2011 we switched to Kettering medical center and that if he pulled his chart up

electronically then he would have an updated list. He somehow can’t so I pull it up on my phone and

start reading his numbers when a nurse comes in with an updated chart. The doctor then back pedals

and tries to refer us to another doctor who specializes in pediatric cholesterol. He then goes on to

explain that my son’s simple fainting spell was due to dehydration. He gives us a twenty minute lecture

about drinking water, cutting out soda and energy drinks and raising my sons head board of his bed to

help with blood flow. Still he has yet to look at my son or listen to his heart. I ask if we are done and if

we can get on to the echocardiogram that my doctor had scheduled and he then tells me that I never
scheduled it. It took him another fifteen minutes of telling me that I was wrong and I never scheduled it

and that someone who actually scheduled it was in it now. He then leaves because he has another

meeting across town. His nurse then comes in and asks us if we would like to wait until the current

person is done with the test then she can fit us in since the doctor canceled our appointment without our

consent. We stayed, had the test done and was told the doctor would call us with results. The doctor

called us that night and lectured us that he went out on a limb for us and had his staff stay late in order

to accommodate us then we didn’t even go through with the test. I told him we did stay and he didn’t

believe us. He informed us the next day that the test results were lost and that we would have to redo

the test. During this time we also pushed for a heart monitor to be placed on our son and the doctor

went ahead and did this and the results came back normal. Needless to say, we are seeing a different

cardiologist this coming week in order to get the tests done on my son’s heart.

Two weeks ago we saw a neurologist at Dayton Children’s. The neurologist that my son saw in

years past has now retired and so he now is seeing someone new. On our first appointment he was

extremely nice and listened to everything. He said that he wants new scans and orders them but tells us

that he thinks my son was misdiagnosed years ago. He examines my son and looks at old scans and

tells us that based on what he is seeing that in his opinion my son suffered a small stroke either right

before or right after birth. My son does have an area on his brain that this doctor thinks is a pocket of

water but based on lesions and the fact that my son is hyper flexible on his right side but has limited

flexibility on his left side this points to a diagnosis of a stroke. We have a contrasting MRI on August

16th so we can delve deeper and hopefully get some answers.

In the meantime we are still left with uncertainty. My son is limited on physical activity, we are

pumping him full of water all the time and never leaving him alone. Over the years we have found that

we have to question everything a doctor tells us and if we see five doctors we will have eight different

opinions. After all this I really think that there needs to be a better way. Why is the doctor refusing to

do the tests? Why is he insinuating that all teenagers sit around drinking soda and energy drinks? When
do you know as a parent when it is okay to advocate for your child or when to take a doctors word for

it? Is my son suffering from strokes, dehydration, heart problems or a problem with what may or may

not be a cyst on his brain? How can we trust when we do have an answer that it is the correct answer?

I then started sharing my experience with friends and family and they started telling me of their

own horrors with the medical community. A co worker shared with me the problems of getting her

mother the proper diagnosis of cancer and the last three years of fighting with the team of doctors who

are in charge of her mother. The team that should work together to give her the best care seems to

disagree and my friend has to act as a go between on her mothers behalf. The doctors don’t

communicate and because one of the specialist is outside the network as the primary oncologist they do

not get the updated notes on a weekly basis. Is it so hard for the medical community to give access to

others within the medical community? Is it really that hard for doctors to agree on a course of

treatment? Although this seems to be an isolated event in reality this happens far more often then it

should.

Healthline.com states that “between 40,000 and 80,000 people die every

year due to misdiagnosis complications.” “Women and minorities are 20% to 30%

more likely to be misdiagnosed” and that about “12 million people are affected by

a medical diagnostic error each year.” With these numbers so high why are we so

afraid to stand up to doctors and why are doctors not taking it more seriously?

Docpanel.com says that “10 to 20% are patients with serious medical issues” and that “44% are

patients with cancer”. They also say that of the 88% of patients that go get a second opinion that “66%

will get a redefined diagnosis” and that an astounding “21% will get a completely new diagnosis.”

They also say that “28% of people who are misdiagnosed actually have life threatening or life altering

diagnosis.”

Fiercehealthcare.com says that “1 in 3 misdiagnoses results in serious injury or death.” That

means that 33% of the time a diagnosis that you receive is wrong and can lead to death or injury, so
how do you know what to trust?

I never paid much attention to those annoying commercials that says “if you have ever had a

mesh implant then call blah blah blah, you could be entitled to cash compensation.” Those commercials

are so annoying and they cover so many random health issues. I always just made fun of them and

disregarded them But after looking at the alarming rate of misdiagnosis I wondered what happens to

those people. 2Keller.com states that about only “2% of people who suffer from medical malpractice

ever file a claim.” Princelawfirm.net is a law firm that are “advocates for the injured” and they tell us

that there are a lot of obstacles to over come and that a lawyer is necessary because of the complexity

of the cases. Even with a lawyer “physicians win 80% to 90% of cases with weak evidence” and of

those who do win only “5% receive payout for diagnostic or treatment errors.” Based on that and the

fact that if you lose you are financially responsible to pay all the court cost and lawyer fees most

people can’t afford to sue due to a misdiagnosis. So if getting a diagnosis is a problem and the

diagnosis is commonly wrong but if its wrong then there isn’t much you can do about it what is the

point of doctors? Couldn’t we all just go online, self diagnose and treat with home based remedies or

alternative medicine. We wouldn’t need all the invasive tests that give us false information or expensive

health insurance or doctors bills. Kff.org says that “an average family spends about 11% of their

income not including employer contributions”, if the person is employed, if the same person isn’t

employed then” they would spend an average of 20% of their income on health care.”

Ehealthinsurance.com states that the average individual spends about $456 a month for health

insurance and a family would spend about $1437 for health insurance. This is just the cost of having

coverage, this doesn’t include deductibles or co-pays or your out of pocket percentage.

So what is the cost or the price of having a misdiagnosis? If you are a part of the 33% then that

would mean death or something life altering but what about the other 67%? Pinnaclecare.com says that

“diagnostic errors and other inefficiencies cost the U.S. economy $750 billion each year.” Hg.org is a

legal resource website that shares the astounding human costs of a medical misdiagnosis. It tells us that
“most people will experience a misdiagnosis in their life and never know about it.”

So what is it like to be the doctor and know that you will make a mistake and someones life will

depend on it? Most doctors go into the profession knowing that they will have someone die on their

watch. Studies show that doctors suffer from depression, guilt and PTSD because of a misdiagnosis.

They also spend thousands of dollars every year for malpractice insurance because they know it is

inevitable that they will make a mistake. So how do doctors make the decisions on whether to go with a

statistic that it is most likely the easiest and most common or a more serious illness? Doctors say they

want to do more but with health insurance companies not willing to pay for unnecessary testing. So

how do they know when to fight for the test and when to let it go? Most doctors say that the health

insurance will deny most claims without significance reasoning so it isn’t worth the man power and

cost to push for extra tests. So for doctors they put the blame on health insurance companies but

ultimately it is their malpractice insurance and their medical license that is on the line. That right there

is enough of a reason to push for the patient.

So again, when do you know when to fight for you child and their rights to tests and a diagnosis

that fits them and not just the norm. Ultimately in my opinion it comes down to you. You know your

child, you know what is typical of them and what is not. I know with my child that if it can go wrong it

most likely will go wrong. A simple asthma medication shouldn’t shut down his kidney, it’s unlikely

that he will be allergic to his daily asthma medication, its unlikely that he will have a cyst on his brain

and tongue, its unlikely that he will be allergic to baby formula, it’s unlikely that he had a stroke right

before or right after birth. So many unlikely stories over the years yet my son has fit the bill for all of

them. Now it is up to me to fight to get a sound and concrete diagnosis from both his cardiologist and

his neurologist, even if that means filing a complaint against his pediatric cardiologist at Dayton

Children’s. It is up to me to fight for my child because statistics states that he will have a misdiagnosis

in his life and that misdiagnosis could cost him his life.
Work Cited:

Docpanel.com, website, used 8/8/2021

Fiercehealthcare.com, website, used 8/8/2021

Healthline.com, website, used 8/8/2021

Hg.org, website, used 8/8/2021

Kff.org, website, used 8/8/2021

Pinnaclecare.com, website, used 8/8/2021

Princelawfirm.net, website, used 8/8/2021