Letter I will be sending to Vanderbilt

Some of you may have already seen my earlier draft, but here's my final draft that I will be sending to patient affairs and several other departments following our recent hospital stay. Please feel free to leave any input!

July 23, 2010


To Whom It May Concern:

I would like to take a moment to discuss my recent experience with Vanderbilt Children’s Hospital. I have had an overall dissatisfying experience despite the many wonderful facets of your institution, and I hope that, by sharing, I may improve the experience for other families in the future.

To begin, let me first tell you a little about my son. He was a surviving twin born at 23 weeks gestation who spent his first eight months of life in the NICU. He is now a curious, rambunctious two-year-old with multiple chronic medical issues. He, most notably, is diagnosed with pulmonary hypertension, atrial septal defects, broncho-pulmonary dysplasia, cerebellar hypoplasia, and a paralyzed vocal chord, and he requires supplemental O2, Viagra therapy, and a feeding tube in his daily life to maintain his health. We have scheduled, routine visits here at Vanderbilt with pulmonology, endocrinology, otolaryngology, audiology, and opthamology, and we routinely utilize specialists outside of Vanderbilt for cardiology and neurology.

I tell you all this because on Saturday, July 17, my son experienced a spontaneous apparent life threatening event of unknown etiology in our home, requiring me to resuscitate, and resulting in our first emergent transport, first ER visit, and first unplanned hospitalization in the 20 months he has been home from the NICU.

Upon arrival, the treatment team gathered information and began routine labs and a chest x-ray to determine what had caused the event, but the focus was quickly shifted to a thinly-veiled abuse investigation during which I was made to feel guilty until proven innocent.

I recognize and appreciate there are procedures in place to protect our children, and many times before I have been the one doing the investigating. I would have had no issues with the barrage of loaded questions or with my son being put through a full-skeletal x-ray and other exams, had someone simply said, “We’re sorry, this is standard operating procedure for any child with petechial hemorrhaging ,” or something comparable. I do, however, have a problem with being treated discourteously when there is overwhelming evidence to anyone who looks at the child, his behavioral responses, and his medical history, that our child is extremely well taken care of and remarkably healthy despite his chronic concerns, and I also take issue with being outright lied to about why the tests are being done in the first place. I understand that everyone is still feeling outrage regarding the pediatrician from Mt. Juliet who recently killed her adopted daughter, but every family cannot be blamed for one family’s very tragic, heartbreaking decisions. A little more communication, courtesy, and common sense could have gone a long way in making this already traumatic situation a little less stressful for us as a family, and I can only hope that every special needs family is not treated with the same manner of accusation and disrespect that we felt with our own special needs child.

Once the abuse allegations were put to rest, and the standard tests and an EKG came back normal, we were told we could go home. The doctors felt it had “probably just been a febrile seizure brought on by his current viral infection” and that he was fine to go home if I was comfortable. I was not comfortable. At that time, my son was still running a fever of 102.7-103.7 requiring ongoing Tylenol and Motrin, and he was experiencing infrequent, but present, apnea and desat spells. He was unable to eat food by mouth without coughing and gagging until he vomited. In addition to those things, please don’t forget my son had recently had a spontaneous ALTE at home that required resuscitation, and I was not content with him “probably being fine.” Listening to a doctor who said everything would “probably be fine” is why I now have a dead daughter and a son who’s had to fight so hard to live, so please forgive me for being a little extra cautious.

I want to add here that, as a mother of a chronic lung diseased child with cardiac issues, I am familiar with what is normal for him, and what is very much not normal for him. I know his breath sounds and his coloring. I know what my child looks like when he sats in the 50s or 60s. I know when I’m getting a false reading on the oximeter. I know how to tell by how blue my child is just how serious his current condition is. I am not an expert in all children, but I know my own child better than anyone else, and I know that, on Saturday, when I found him, he was not breathing and he was gray, nonresponsive, limp, and lifeless. I am not exaggerating the situation nor making light of it; it is what it is. That being said, I never felt as if anyone gave any credence to what I saw or did, as obviously I am just a mother, and one they had already labeled as a child abuser, no less.

My final complaint is the apparent lack of communication with my son’s specialists. When a chronically-ill child who has been medically stable suddenly stops breathing, it seems to me that consulting the child’s pulmonologist and cardiologist would be fairly routine steps in the treatment process, as well as possibly his ENT and neurologist as other potential diagnoses arise. I was extremely disappointed to find that, despite my verbal request to do so, my son’s cardiologist had not been notified of my son’s event or emergent hospitalization, especially considering she was on-call the weekend the event occurred. She instead came by after I alerted her to his hospitalization to do an evaluation of my son’s cardiac function based on her own concerns. My son’s regular pulmonologist also came by per my request after our attending had already offered to discharge us. Both specialists have been following my son since discharge from the NICU and have extensive knowledge of his history and patterns that could have been beneficial to the treatment process if utilized, and I would never have felt safe taking my son home following such a potentially devastating event without their input. I feel not seeking their input prior to attempting to discharge my son was medically negligent considering my son’s extensive medical history and the treatment team’s inability to determine a definitive etiology of the ALTE. I also repeatedly asked the team to contact the otolaryngology department to have someone come examine my son and make recommendations regarding any apnea and swallowing issues, and the team adamantly and repeatedly refused my request, instead opting to set up an outpatient visit the day after discharge. I did not find it safe or beneficial for any involved parties to return my son with an obviously nasty virus to the hospital to a waiting room filled with mostly well- and medically-fragile children, although I did follow through with the appointment as requested.

I would like to add, however, that despite my lack of satisfaction with much of my experience, we did receive excellent nursing care and care partner assistance during our stay, and I was surprisingly pleased with Katherine Shaw, the medical student assigned to our case. I very rarely have pleasant experiences with the residents, and that remained mostly true this visit, however, our medical student was honest with me each time she visited our room, and she exhibited an outstanding ability to work within the boundaries of her knowledge while still maintaining an air of intelligence, professionalism, and compassion. She also seemed more interested in gaining knowledge and experience than simply showing off that which she had already acquired, and that is a rare but welcome characteristic of a resident based on our previous experiences. Based on what we saw of her during our visit, she will potentially one day be the kind of doctor we would choose for our children, and it’s rare that I make that type of statement regarding a student, resident, or, to be completely honest, attending. We were grateful to have her on my son’s treatment team, and we feel she will be a great asset to your residency program.

Thank you for allowing me to voice my opinions on our stay. Hospitalization is never pleasant, but some very minor changes in how our son’s treatment was approached could have had a major impact on my feelings about this stay and Vanderbilt in general. At this time, however, I am left feeling disappointed, dissatisfied, and angry, and will in the future spend more time weighing the costs and benefits of traveling to more distant children’s hospitals in hopes of better service and commitment to the children and families served.

Thank you for your time, and for all the many good things you do.


Sincerely,




Mollie Sheppard, mother of Daxton Sheppard

 
Thoughts?