Not with Great Frequency: Compare, Contrast. Then & Now.

Yesterday I had the opportunity to speak at the Stanford University Medical Center Summit for Clinical Excellence. The following is the content of the presentation.

I don't need to tell you it is brutal to lose a child, and it is not my intention to make you sad for me or for my son.

This is a story of contrast and comparison, between what I know now and what I knew before.   My intention in telling you this is to bring something good from a horrible thing, to not allow it to become any worse.

When Gabriel was three months old he was diagnosed with hydrocephalus as a result of an intracranial hemorrhage he developed en utero. Three days later he had surgery to place a shunt in his brain. The doctors told me he could never wrestle, play soccer or football, that was fine. I was glad to think he could never be drafted.

The next 17 months were pretty normal baby raising days - bottles, diapers, laundry, smiling, crawling, and playing. More laundry.

He charmed a lot of people. Unlike his older sister, Sophia, he didn't care who was holding or playing with him and was happy wherever he went. His vision suffered from optic nerve damage, but that felt like a small obstacle.

I didn't think much about his shunt. I could feel it under his thick hair, as well as the thin tube down the side of his neck.

The advice regarding the shunt was straight forward and simple: try not to bump it and if he starts throwing up take him to the ER.

On a Thursday in August, when he was 20 months old, Gabriel started throwing up. A lot. Along with his most recent CT films, I took him to the ER at Washoe Medical Center in Reno, miraculously avoided a 3 hour wait, held him down for x-rays, and wrapped him up for the CT scan. The nurses gave me a new t-shirt since mine was covered in vomit. The CT scans showed no change in the size of his ventricles, Gabriel had no fever and no diarrhea. Possible problems with the shunt were overlooked given the normal CT.

I didn't know that CT scans are not an absolute when determining a shunt failure. Our pediatrician diagnosed Gabriel with a stomach virus, admitted him to the hospital, and we stayed there for three days.

Gabriel was given IV Phenergan to treat the nausea. Now I know that was a mistake, since this caused drowsiness, masking the neurological emergency. During our stay, there were peaks and valleys. He would feel good, crawl around the hallways with an IV in his hand, and then suddenly be sick again.

In the back of my mind I knew it was shunt failure, more surgeries and more time in the hospital were the scariest things I could think of.

I had no idea that four days later I would be telling my daughter that her baby brother had died, and hear her explain to me that she would never see him again. I had no idea that most shunts failed within the first two years of placement, or worse that shunt failure could very quickly be fatal. I was worried, but still I was happy to leave the hospital on Saturday.

When we got home Gabriel was okay for a while, but then he fell asleep. He slept and slept and slept. I could barely get him to wake up. I called the doctor who said he was probably hypoglycemic from not eating or sedated from the phenergan and he would be better soon.

He slept all day on Sunday too. He finally woke up when I put him in a cold bath. He must have felt like hell, but he still smiled and splashed in the water.

Dr. Edwards immediately started making calls to get Gabriel into Lucille Packard Children's Hospital, explaining to me the absurdly complex process of getting us admitted.

I called to make arrangements to be gone for a week and drove the 200 miles with Gabriel moaning and crying like a kitten. Air ambulance was considered but it was determined that driving by private vehicle would be faster.

We got stuck in traffic on the Bay Bridge, I wondered if a helicopter could get to us.

They expected us at 7 pm, we arrived at 7:02, I was so relieved to not have made a wrong turn, something I am very prone to doing. A lady who didn't speak English gave me cuts in the admitting line, she could see Gabriel was feeling terrible.

When we got upstairs to telemetry, the admitting clerk sharply said to me, "We were expecting you at 7." I could have really done without that comment.

I would learn later that Dr. Huhn had waited for us until 8:00, but no one had called to tell him we were there.

A pediatrician, who reminded me of my good friend Carol, sat and read Gabriel's thick chart. This impressed me and I felt reassured. There would be more doctors, nurses and paperwork that night, and multiple attempts to get an IV into Gabriel's dehydrated little arm.

A nurse came up from the ICU to help with the needle, the next night, this same woman, would be removing Gabriel's breathing tube and cutting locks of his hair.

I liked our telemetry nurse, tall and thin. Her name was Francis, that is my Grandma's middle name. I remember thinking she was so frantic and rushed. Later I would find out she was also taking care of a sick little girl who was having respiratory problems in another room.

Then it was late. I thanked Francis when she turned off the volume on Gabriel's noisy monitors. Eventually, everybody went to sleep.

Suddenly I was awake. The nurse grabbing the foot rest of the bright turquoise recliner, swinging me around saying, "Leilani, you have to get up!" Instantly the room was full of people. "Code Blue" blared from the intercom. Someone pulled me out of the room.

I know I do not need to explain the intensity that was in the air. In the commotion, my mother-in-law would lose the wedding band she had worn for 45 years, and I would know my son was gone.

Twenty-four hours after I was jolted from the recliner, Gabriel left in the same manner he did everything, with grace and love. He left before his grandma arrived sparing her the image of his small body full of tubes but empty of life.

There was a young doctor in the room, she wouldn't stop nervously talking to me. I had to put my hand in her face to get her to shut up, I could have done without that too. Suddenly the room was vacant.

Later we would learn that when the nurse had turned off the blaring volume on the monitors, unknowingly the alarms had been turned off everywhere, the room, the nurse’s pager, and the unit clerk’s monitor. Gabriel had stopped breathing about 10 minutes before anyone knew it. His shunt had failed, his brain had herniated.

The following days and weeks are a hazy blur. I do remember the bill from Packard arriving less than a week after Gabriel's funeral for more $43,000. That was another item for the list of things I didn't need.

I started talking to doctors, friends, and other mothers dealing with hydrocephalus about what had happened. I learned a lot about hydrocephalus that I had never known. Then I got angry. It became clear that I had been very uninformed and undereducated about the condition that had killed my son.

It seems you get more information on the tag of pillow than when you get something implanted in your brain. Women with breast implants get cards to carry in their wallets telling them what complications to watch out for, where to call for help. No such convenience is issued with shunts. Apparently boobs are more important than brains.

The lack of accessible and contemporary information became my motivation for something better.

And a goal became very clear, I did not want another mother to learn too late, information about hydrocephalus that could save her child.

As you can probably guess, I found myself in conversations with friends that included talk about lawyers and suing. Of course, I was talking to lawyers, right? Of course, you will sue the hospitals, right? What about Phillips who makes the monitors? I am still a bit resentful of Phillips, they failed Francis and a lot of people at the hospital.

I can't say that I didn't think about legal options, I did. I would also bet that some of you think I am a chump, you know how this system works. You see how broken it is. You think that I made a stupid choice, I naively missed a huge opportunity to be compensated for the loss of Gabriel. But that never made any sense to me and still doesn't.

Gabriel's pediatrician, and still my daughter's, gave me faith in my son. He was the first doctor to give me any reason for optimism after we were told something was very wrong. He said, "The thing about kids is they don't read books. They don't know they aren't supposed to make it."

How could I acknowledge the unintentional errors but ignore the miracle he had helped me find? How could I hold individual parties responsible when the entire medical system is so broken? It failed me, my son and it is failing you.
Later, I was back at Packard, meeting with Pam Wells, Dr, Edwards, Dr. Huhn and administrators. I was pretty angry and came prepared with five pages of questions and rants, I made copies for everyone. I told them that I had a few things that I would like to discuss.

I so clearly remember Dr. Huhn saying "Why don't you tell us what you have to say first." Then I talked for 2 1/2 hours and they listened to me.

This meeting would lead Pam to understand my frustration and become one of my lead supporters. Thank you.

I started talking to the Hydrocephalus Association about some ideas. Somehow the pieces started to fall into place creating a powerful and rare combination of motivation, knowledge and funding.

Eventually with donations from Lucile Packard Children’s Hospital, the Hydrocephalus Association website was recreated, providing comprehensive, accessible and immediate information. A vast improvement from what was available before.

Through this site, people can participate in research projects. Use a physician directory to find doctors by speciality and location.

Using modern technology, the Hydrocephalus Association has cut nearly $70,000 from their annual operating budget and now provides comprehensive information to the millions of people globally who are dealing with hydrocephalus.

Again with funding from Lucile Packard Children’s Hospital, Gabriel’s Life.org came to be. Using the same concepts behind Facebook and MySpace, a community of hope and education was created. Through this project I became friends with two other women whose son's have hydrocephalus.

This is Shannon Christian’s story about her son, Reece. Shannon has uncooperative hair like me, along with hydrocephalus we talk about hair products.

And this is Angela Batterman’s blog about her son, Joseph.

Though I have never met these women, I have no doubt that if they had been in my life 3 1/2 years ago, I would still have Gabriel. I would have called them when Gabriel got sick. They would have told me to call Dr. Edwards on my way to the ER, they would have told me to question the Phenergan.

At the Gabriel’s Life site, with no considerations for time or distance, people can share comfort and tribal wisdom with each other.

Back to our theme of compare and contrast. When Gabriel was six months old we filmed a commercial for the hospital in Reno, the same one were Gabriel was born and spent 15 days in the NICU. The same one that hosted our visit to the ER and our stay when Gabriel was being treated for a “stomach virus”.

This is the comercial for Washoe Medical Center. Download Washoe

The people at this hospital never said they were sorry for what happened. Never acknowledged there were any problems or moved to make any changes. They sent an ugly bouquet. Red carnations.

I invited them to participate in the creation of the websites, but they never acknowledged the invitations. They did, however, spend millions of dollars to change their name from Washoe Medical Center to Renown Health. Needless to say, I am not a fan.

This idea of saying you are sorry and being honest about mistakes, seems to be a revolutionary idea in the world of medicine. An avant garde policy, probably requiring heaps of meetings and reams of documentation, and in some places it is legally prohibited. But for me it is simply the right thing to do.

When bad things happen rarely are people honest, it is just too painful. They say things that make themselves feel better, things that will get them out of the situation as fast as possible. Things like, “Now you have a guardian angel watching out for you,” “Or at least he didn’t suffer” (I don’t think that is true), or my personal favorite, “I don’t have kids, but I had to put my cat to sleep once.” Seriously, people say these things.

When the shit hit the fan, I really just wanted honesty and I still do. I appreciate most the people who say, “I know what happened to you and it is so very awful. I am sorry.”
After Gabriel had crashed and we were huddled around his bed, Dr. Huhn called his fate a disaster, and when he said it there were tears running down his cheeks. That is such a powerful memory to me. That honesty is important, it matters. A lot.

In your world, you see suffering and death all the time, and I thank you for putting yourself in the place were that is a regular part of your life. For the rest of us those things are not typical, we are not accustomed to them and never will be. How you treat us in those moments is so important, they stay with us. The statute of limitations may have run out, but that doesn't keep us from reliving those moments. It won't stop us from being haunted by questions or comforted by honesty.

Life is sloppy. Bad things happen. There is no denying it. But when they do, work to keep them from getting any worse.