Our Son Had Noonan Syndrome - He Passed Away at Cook Children's Hospital

The Fight With Cook Children's Over His Medical Records

Recently I was ordering a beef and broccoli bowl at Panda Express, and I was asked by the lady taking my order if I wanted to make a donation to Cook Children’s Hospital. Cook Children’s is a healthcare system with its main hospital in Fort Worth, TX.

I drove away thinking about Cook Children’s, and the lady asking me for money, and was incensed enough to write this piece about my family’s experience at Cook Children’s Hospital.

When our first son, Abraham, was born, he was immediately having trouble breathing and crying, and we were advised by a doctor at the delivery hospital (which was not Cook Children’s, Cook Children’s is not a delivery hospital), to have our son transferred to Cook Children’s for care. My wife and I, being uninformed and naive, agreed. So he was transferred immediately thereafter.

He was at Cook Children’s hospital from the day he was born until the day he went to heaven, 75 days later.

Here’s a video I made for him.

He had a genetic condition called Noonan Syndrome. We had never heard of Noonan Syndrome. But we learned everything about it. It’s more common than you might think.

According to the UK’s health website NHS:

It's estimated that between 1 in 1,000 and 1 in 2,500 children are born with Noonan syndrome. It affects both sexes and all ethnic groups equally.

It’s the second most common genetic syndrome after Down Syndrome.

It’s usually passed down genetically from a parent that has it (incidentally, there are a lot of people with Noonan Syndrome in Nashville).

But neither of us, my wife or me, have it (we were genetically tested). So it appeared de novo in our son, meaning it originated from nowhere, which is a rare way for a child to get Noonan Syndrome.

It’s normally not fatal. Often people can go their whole lives not knowing they have Noonan Syndrome. The danger of dying as a consequence of having it, depends largely on the severity of the person’s heart condition and lung condition combined, as far as I understand it. Caveat: I’m not a doctor, and this isn’t intended as medical advice.

In our son’s case, the walls of his heart were thick (which is called hypertrophic cardiomyopathy). He also had lymphatic fluid in his lung sack (this space is called the plural space), that was preventing his lungs from fully opening.

The lymphatic fluid wasn’t in his lungs, it was in the space right outside of his lungs. Our lungs exist inside a larger bag, and the space inside this larger bag is called the plural space, and this space had lymphatic fluid preventing the full expansion of his little lungs (so his lungs were being constricted from the outside by the lymphatic fluid).

When he first got to Cook Children’s, they inserted a tube into the plural space and removed the fluid, and he was able to breathe better, but he was on a breathing tube at this point.

Going forward, the plan of care was to monitor any new buildup of lymphatic fluid, get his lungs stronger and off the breathing tube, and eventually get him strong enough to drink milk to put on weight and thrive.

In a few weeks he weaned from the breathing tube to a CPAP, and over more time he transitioned to a nasal cannula, and eventually to no help at all as he started breathing naturally, which the nurses called “room air”.

Early on we stopped monitoring the lymphatic fluid in the plural space as that had become a non-issue because it was no longer building up.

So by all accounts it appeared that he was improving and growing, but his stamina wasn’t great. He would get tuckered out from the effort of drinking milk, and couldn’t drink enough naturally to sustain him or get him to thrive, so they kept him on a feeding tube (down his nose and into his belly).

Eventually we were advised by Dr. Levi to have him undergo a surgical procedure called a fundo, which is short for fundoplication, which alters the junction where the esophagus meets the stomach. It’s normally done to prevent acid reflux. Our son was having difficulty keeping his milk down, and would spit it up.

In the same surgery, they put in a “G-button”, which was a feeding tube portal in his stomach.

The idea was to have a way where my wife and I could administer milk directly to his stomach, in order to get him home and let us care for him. That was the plan. We were told that this surgery would finally allow us take him home.

By the way, we were informed along his hospital stay that if, at any time, we were to take him out of the hospital against their medical advice, we would be personally charged for all expense for his care up to that point, and that Cook Children’s wouldn’t bill our insurance for payment. I don’t know if this is true or not, but that’s what we were told.

It seemed to us that our son was a captive audience to do all kinds of unnecessary medical procedures and tests to him, presumably to run up the medical bill as high as possible. That’s how it seemed. Our 75 days of care averaged $13,333.33 per day.

They did a test for Hirschsprung’s disease, where they injected a fluid into his rectum which actually caused him to stop breathing for about 30 seconds until they revived him. He didn’t have Hirschsprung’s disease. They did a glucose test, a sleep study, and many other things that seemed unnecessary to us.

Two days after the fundo and G-button surgery, when he was in recovery, his heart failed. He died on a Sunday (we were scheduled to take him home on Tuesday).

Normally, when babies have high acuity in the NICU and need close care, a nurse is assigned to them (and only them), and stays in the room with them to closely monitor them.

After the surgery, Abraham was deemed low acuity, and his nurse had other babies to attend to the night of his heart failure.

That night, leading up to the failure, he had been having some dysrhythmia, or odd heartbeat patterns, and in the middle of the night his heart seemingly just gave out. Apparently his odd heartbeats weren’t sustainable.

When his heart started to finally fail, a nurse (other than his nurse) happened to be walking by his room, noticed his heart failure on the monitor, and ran in and pushed the crash button.

When a baby has an event (like a heart failure, or they stop breathing), it triggers the assigned nurse to the event through an alarm device that they wear on their uniform. This device is wirelessly connected to a baby’s heart monitor, oxygen levels and other vitals.

I don’t know why our nurse wasn’t there or responding when Abraham went into heart failure. Especially given that his heartbeats were showing unsustainable rhythms that lead up to his heart failure. My suspicion is that his nurse, who I know was in another room, was cancelling the alarms as they signaled her device.

The doctors who responded to the crash gave him adrenaline, intubated him, and a lot of other things to get him back to life. However, it took them 30 minutes to revive him.

My wife and I got a call from one of the nurses at 3:45 am, and she told us to rush up to the hospital. When we walked into the room, it was filled with nurses and doctors, and I noticed some blood on the floor, and they looked at us with a look that I can only describe as pale-faced dreadful mortification. Just from walking in and seeing their grave faces we knew it was not good.

He was swollen, intubated, his eyes were open but glossed over. It didn’t appear that he was focusing on anything. The next day they did a brain scan on him, and it turns out that he was, for all purposes, brain dead. The time it took to revive him was too long to go without oxygen, and he had no functional brain activity.

That night, his heart again went into an unsustainable rhythm, and they asked if we wanted them to use the defibrillator on him to shock him and try to get his heart pumping correctly. We looked at his little swollen body, and we knew it was over. That what they were doing to him was something like torture in keeping him “alive”.

It was obvious to us, and the nurses told us this, that he was only alive because of the machines breathing for him. So we said no, and asked to hold him until he passed away. So they disconnected him from everything except the breathing tube, and handed him to us.

I say all of this to give the backdrop of our experience at Cook Children’s Hospital.

I found out later from a doctor that is an expert in Noonan Syndrome, Dr. Bruce Gelb, that whenever a Noonan Syndrome baby shows lymphatic fluid in the lung sack, along with thickened heart walls, that that baby has less than a 30% chance of surviving to be one year old. He told me that what happens to Noonan Syndrome babies with these two symptoms, is that their heart just gives out unexpectedly. He said it’s not known why it happens at any particular time.

It made me think that his surgery was a tipping point that he physically couldn’t handle. Maybe he would’ve lived longer if they didn’t do the surgery. He went into heart failure on the second night of his recovery from the surgery. We could tell that there was something wrong with him that night, because he was grey in color, and we could tell he didn’t feel well.

It’s important to understand that we were, as were the nurses and doctors, totally blindsided by his heart failure.

We were never told any of what Dr. Gelb told us from the doctors at Cook Children’s. We thought we had a child with zero chance of having heart failure. It was never discussed at all. Our main doctor, Dr. Nedrelow, told me that as Abraham grew up and his heart grew, that his thickened heart walls would thin out.

This is partly why they were in such stupefied shock and unprepared when Abraham’s heart failed.

Looking back, after our son passed away, and with the understanding we gained from consulting a doctor that was a Noonan’s Syndrome expert, that our son’s life expectancy required the insights of a Noonan Syndrome specialist. No such specialist was ever consulted by the doctors at Cook Children’s.

In my opinion the culture seemed to me, at least how it appeared during my son’s stay, that the doctors’ arrogance prevented them from seeking outside expertise. They thought they understood his condition, and that it was not a remote possibility that he would die, and that he was healthy enough to survive the surgery.

My own speculation is that the trauma from the stomach surgery caused his heart to fail.

I’m now getting to the point of this story.

The Fight Over Abraham’s Heartbeat Information

I was desperate to get the heartbeat monitoring data to try and understand what happened to his heart. Babies don’t just have heart failure. I needed an experienced doctor to see what his heart was doing leading up to the heart attack, and what it was doing after. As a father, I needed to know what happened to my son.

A simple request for the heart monitor data was denied by Cook Children’s on the grounds that heartbeat monitor data isn’t part of medical records, and that I wasn’t entitled to that information. No matter that my son had a heart attack and I was asking for his heartbeat information.

I found out the software system that Cook Children’s used at the time as their heart monitoring system. It was called BedMaster. It was a private company out of Florida that would sell their proprietary heart monitoring software to hospital systems. I called the BedMaster and tried to buy the software. They wouldn’t sell it to me. So I started contacting doctors at other hospitals to see if they used the system and if they would look at my son’s records if I could get my hands on it.

I just happened to have found the head NICU doctor at Children’s Medical in Dallas, named Dr. Scott, that was considering outfitting his entire NICU with BedMaster software.

So I asked him if he would review my son’s heart data if I could get it to him. Dr. Scott agreed to review it.

Meanwhile BedMaster told me that they were informed by Cook Children’s that BedMaster couldn’t view my son’s heart monitor data, or else it would violate HIPAA rules.

I then told BedMaster that I would fill out the necessary release so that they could view my son’s medical records, and BedMaster told me that they’d be happy to help me and Dr. Scott to view my son’s heartbeats.

So I formally authorized BedMaster and Dr. Scott to view all of my son’s medical records that were at Cook Children’s.

Now I just had to get the heartbeat monitoring data from Cook Children’s.

And that’s when I was referred to speak with Frank Testa, who at the time worked in Risk Management for Cook Children’s.

Here’s the recording of Mr. Testa telling me that my son’s heartbeat information isn’t part of my son’s medical records, and that I’m not going to get it:

Can you imagine telling a grieving father that his son’s heartbeats are not part of the medical record, and that he won’t be getting to see what his son’s heartbeats were like leading up to his heart attack, that led to his death?

I can only assume, given that he finally relented, that he realized I wasn’t budging, and that his job was to persuade me to stop trying, which I assume he realized was futile.

I was finally given the data on a hard drive, and drove it to Dallas to give to the doctor at Children’s Medical. Now I could finally get an objective, third-party professional opinion on what happened to my son leading up to his heart failure.

When I talked to BedMaster, they said they’d be more than happy to help Dr. Scott at Children’s Medical in Dallas, to view Abraham’s heartbeats. Dr. Scott was also in communication with BedMaster, and told them he was looking forward to reviewing my son’s heartbeat data as part of his evaluation of their software.

But, my hope was naive.

Dr. Scott, having just installed the BedMaster software, told me that it wouldn’t accept our son’s data for some strange reason.

So I called BedMaster, and they told me that Cook Children’s had told them that they shouldn’t allow Dr. Scott to view my son’s heartbeat data.

So BedMaster specifically altered the software that they gave to Dr. Scott, to not allow any incoming heartbeat data. The software could be hooked up to a baby that was already there in the NICU, but the option to view any other incoming data, from any patient at any other hospital, was blocked. BedMaster had specially and intentionally blocked my son’s heartbeat data from being viewed by altering their software.

As you heard in my argument with Mr. Testa, BedMaster’s software allows for transferring data between hospitals.

However, Cook Children’s had influenced BedMaster sufficiently, the details of which were unknown to me, and BedMaster caved, and altered their software to make it impossible for Dr. Scott to see my son’s heartbeats.

So, just to be clear about what I’m saying, Cook Children’s, in Fort Worth, somehow “persuaded” a private company, based in Florida, whose job it was to sell their software to hospitals, to alter their software to block a doctor from viewing my son’s heartbeats.

Think about that. I don’t know if Dr. Scott ever went forward on buying BedMaster’s software.

As near as I can tell, BedMaster Analytics, LLC, was a software company underneath Excel Medical. BedMaster Analytics is now defunct.

Excel Medical’s profile on LinkedIn says “Excel Medical’s technologies were designed with one goal in mind—to eradicate unexpected deaths in hospitals.” The irony.

Cook Children’s then charged us a little over $1 million dollars for Abraham’s stay. Thankfully we had good insurance, and didn’t have to pay much out of pocket. Also our church gave us a donation to help offset our out of pocket expenses.

Cook Children’s is a nonprofit healthcare system. But they pay their executives millions of dollars a year. In general, nonprofit hospitals don’t have to pay federal income tax, state taxes, or property taxes. Cook Children’s takes up a sizable section of land where their healthcare system resides, and this loss in property taxes has to be either a loss for the city of Fort Worth, or Fort Worth recoups it by averaging the loss across the residents of Fort Worth.

However, they still pay their executives quite handsomely. Since they are a nonprofit, their tax filings can be viewed.

In 2022, the Cook Children’s healthcare system made $1 billion, 770 million dollars. Specifically, they made $1,772,072,835.00. This averages out to making $485,499.41 every day.

And by the way, the doctors’ expenses aren’t included in this cost. If you have a child in the NICU, you pay the doctors separately, because they’re part of a different company. So this expense is for the nurses and the facilities at Cook Children’s.

Contributions from people totaled $17 million in 2022, which amounts to 1% of Cook Children’s gross income. But it’s enough to pay the multi-million dollar salaries of its executives.

So let’s look at what they pay their executives.

Collectively they paid $6,353,542 to executives in 2022.

Some of the highest paid:

• Rick W Merrill (Chief Executive Officer) $2,663,388

• Nancy C Cychol (President/Chief Hospital Svcs) $1,087,993

• James C Cunningham Md (Evp, Cmo) $1,125,497

• Stephen W Kimmel (Evp, Sys Finance) $1,205,175

• Joseph M Gallagher (Sr. Vp, Chief Legal Officer) $885,609

• Cory R Rhoades (Cfo) $874,163

• Stanley E Davis (Sr. Vice President, Coo) $743,408

• Cheryl Petersen (Vp Nursing, Cno) $522,458

• Jack Sosebee (Vice President) $446,433

• Elia Valencia Stokes (Avp Finance) $371,932

• Orlando Chapa (Avp Nursing) $336,102

• Deborah Boudreaux (Avp Nursing) $334,853

• Tammy Thomlison (Avp Revenue) $292,051

• Ozioma Olowu (Director Of Pharmacy) $278,055

• Gary Munford (Day/Wknd Administrator) $258,367

• Tamara Sims (Rn, Staff) $240,190

• Nicholas Markham (Avp Facilities/Campus Svcs) $243,581

• Margie Dorman O'donnell (Director, Case Management) $231,893

• Jessica Sibr (Pharmacist) $236,004

• Kevin Greene (Avp North Campus) $237,542

• Theresa Z Meadows (Sr. Vp, Chief Info Officer) $790,970

• Spencer D Seals (Vp Construction & Real Estate) $462,574

All of this information is publicly available given that they have a nonprofit tax designation.

So, no, I don’t want to give money to Cook Children’s along with my beef and broccoli order at Panda Express.

Knowing what I know now, I would take my sick child to Children’s Medical, and stay away from Cook Children’s.