Healthcare reform is a crucial issue.
While much debate surrounds government finances, I am most concerned about our children's health.
Click here to read my blog post in #NeurosurgeryBlog, a forum for health policy.
On Dec. 14, 2016 the U.S. Food and Drug Administration (FDA) issued a safety announcement regarding the potential effect of anesthetics on children younger than 3 years of age. The FDA announcement specific points to multiple repeated anesthetics and/or prolonged anesthesia over 3 hours.
Some recent studies suggest that a single, short exposure to general anesthetic and sedation drugs in infants or toddlers is unlikely to have negative effects on behavior or learning. However, much more research is needed to fully understand how early life anesthetic exposure affects children’s brain development.
Surgery is scary enough: how should moms and dads evaluate the risk of anesthesia drugs and the possible effects on their baby? Studies are currently ongoing, aiming at characterizing how exposure to anesthesia drugs at a young age may affect children in the long run. The medical and scientific community does not have enough information to be able to draw definitive conclusions at this point.
Open, honest conversations are recommended. Families and children's doctors should discuss these issues in the context of each child's care. If a surgery or procedure requiring anesthesia is definitely needed for the health of the child, it should not be delayed. However, if a procedure does not need to be done at an early age, it makes sense to consider the timing. These conversations should be addressed on an individual basis, and families should engage with their physicians to make sure they understand and feel comfortable with choices for their children. Remember, there are no "silly" or "minor" questions with the doctor... it is important for parents to understand and to feel comfortable with choices they are making together with their children's physicians: the choice is for the child and for the family.
Here are more resources about this issue:
Being thankful is, in my mind, a way of life. Life is too short and precious for negativity. I was delighted to find this Washington Post article, which provides affirmation on the practice of gratitude.
People who practice daily gratitude tend to be happier and healthier.
In this article, reporter Colby Itkowitz interviews researcher Robert Emmons, who studies gratitude. I love the comments. They capture the essence of an approach to life that has gotten me through a lot of good times and tough times.
"Gratitude is too good to be left at the Thanksgiving table. I believe that gratitude is the best approach to life. When life is going well, it allows us to celebrate and magnify the goodness. When life is going badly, it provides a perspective by which we can view life in its entirety and not be overwhelmed by temporary circumstances. People who live under an “aura of pervasive thankfulness” reap the rewards of grateful living; conversely, those who fail to feel gratitude cheat themselves out of their experience of life. And why would we want to cheat ourselves?
This approach that needs to be cultivated, it’s not going to come easily or automatically. This is when gratitude displays its power and potential. This is when we need to press into our sources of gratitude more deeply — family, faith, freedom — all those circumstances, people, opportunities that we give thanks for each and every day, not just on the fourth Thursday of November."
Futher, Emmons comments on dealing with stress and negativity:
"Indeed, gratitude rescues us from negativity. Left to their own devices, our minds tend to hijack each and every opportunity for happiness. Negativity, entitlement, resentfulness, forgetfulness, ungratefulness all clamor for our attention. Whether stemming from our own internal thoughts or to the daily news headlines, we are exposed to a constant drip of negativity. Doom and gloom is on the horizon, as financial fears, relational turmoil and health challenges threaten us. Weighed down by negativity, we are worn down, worn out, emotionally and physically exhausted.... We need to constantly and regularly create and take in positive experiences. Gratitude is our best weapon, an ally to counter these internal and external threats that rob us of sustainable joy. In gratitude, we focus on the giftedness of life. We affirm that goodness exists, even among the rancor of daily life. This realization itself is freeing, liberating, redeeming. Gratitude works!"
What are you thankful for? Make a list every day. Practice gratitude. Your mind, your health, your friends, your family, your future self will thank you for it.
I am thankful for the trust and the faith from my patients and their families. One of my patient's mothers shared her inspiring story in Woman's World magazine, on the newsstands Thanksgiving week. This amazing family reminds us to count our blessings, as they do every day. After epilepsy surgery, little Noah has been seizure-free for over 2 years and counting. It is wonderful to see him grow up and to celebrate his #brainiversary! Read Noah, Mallory, and Craig's story here.
We recently met with Erica Mossholder, the Executive Director of the Children's Craniofacial Association. Check out the CCA website and the terrific work our non-profit partner is doing to empower children and families of kids with craniofacial differences.
The #ChooseKind movement is an anti-bullying campaign inspired by the book Wonder by R.J. Palacio. It is a powerful story and life lesson for children and adults alike. The book has opened the conversation about craniofacial differences in classrooms, families, and communities.
About Wonder by R.J. Palacio from Random House Kids:
"August Pullman was born with a facial deformity that, up until now, has prevented him from going to a mainstream school. Starting 5th grade at Beecher Prep, he wants nothing more than to be treated as an ordinary kid—but his new classmates can't get past Auggie's extraordinary face. WONDER by R.J. Palacio begins from Auggie's point of view, but soon switches to include his classmates, his sister, her boyfriend, and others. These perspectives converge in a portrait of one community's struggle with empathy, compassion, and acceptance. In a world where bullying among young people is an epidemic, this is a refreshing new narrative full of heart and hope. R.J. Palacio has called her debut novel "a meditation on kindness"—indeed, every reader will come away with a greater appreciation for the simple courage of friendship. Auggie is a hero to root for, a diamond in the rough who proves that you can't blend in when you were born to stand out."
Join the conversation on Twitter: #thewonderofwonder and #ChooseKind
Consider the #ChooseKind movement and take the #ChooseKind pledge here.
A lifetime achievement award in Pediatric Neurosurgery is only bestowed to a GREAT: someone who has moved the field forward in countless ways and essentially changed the face of Pediatric Neurosurgery. There have only 8 Franc D. Ingraham Award for Distinguished Service and Achievement recipients in history: giants in our field. The last one was my mentor, A. Leland Albright, an incredible person.
The next recipient selected for this honor is my boss and Chief Quality Officer for Surgery at Texas Children's Hospital: Thomas G. Luerssen. The presentation will take place at the AANS/CNS Joint Section on Pediatric Neurosurgery annual conference in Orlando in December 2016. What a special honor to a truly venerable neurosurgeon, colleague, friend, and leader.
Our group will be at the conference presenting our scientific research, but more importantly, we will be there to honor the GREAT Dr. Luerssen and his wife Norma who has supported him all the way.
Everyone has stories about Tom leading by example, dispensing sage advice, being there no matter what. Some people always know the right way forward: that is Tom. We are so proud he is receiving this highest recognition.
When it comes to health and illness, it is hard to plan for life as usual when faced with the unexpected. There are so many unknowns. Hopes, dreams, fears, and uncertainties come together. Daily life routines are not possible. It can be overwhelming. I take care of children with neurosurgery needs, so there is really nothing normal for parents and families as we navigate the journey together. Surgery on your child is undeniably, unquestionably A Big Deal, no matter how routine it might be for the surgery team.
Healthcare journeys are personal, private experiences for some. I have seen incredible inner strength, serenity, and grace.
I have also seen examples of inspiring humanity and generosity of communities coming together. The kindness of neighbors, friends, family, and people cannot be underestimated.
The conversation can be tough to initiate, both for patient families and for those who would like to help. How does one ask for help when their child is undergoing surgery? On the other side, how does one offer compassion and assistance while respecting space and privacy? Too often, "Let me know if I can help" somehow seems hollow. Considerate action speaks louder than words.
There is not a “right” or a “wrong” way. Families have shared wonderful stories with me over the years. Perhaps I can help parents and communities start the conversation if I give some examples that have inspired me. Please feel free to share with parents, families, neighbors, community members, support systems of all types!
Creating a calendar and having meals dropped off at the patient’s house can decompress the family, and allow parents to spend more time with their family member who needs attention. Prepared meals for the entire household ensures everyone is cared for.
Other children or elderly members of the household need supervision and attention while parents are focused on the child receiving healthcare. Offers to take care of the other dependents in the family, even for a few hours (taking them on outings, hosting a sleepover, helping with homework), allows parents to focus on the child who needs more attention at the time. Parents also need time for themselves to recharge and recuperate, to be able to stay strong for the rest of the family.
Mowing the lawn, doing the dishes seem manageable in normal weekly routines, but not when so many things are happening and demanding of the parents’ time and attention. Accepting help does not come naturally to everyone. Many parents decline offers for this type of help, but then realize they are so relieved when these tasks are done.
Children who are part of an activity, a group, or a team are often sad that they cannot participate and belong while they are receiving healthcare treatment and during their recovery process. There are many things organizers, coaches, teammates, teachers, and families can do to assure patients that they are indeed still part of the family and will be welcomed back in any capacity.
Signed balls, jerseys, paraphernalia from teammates and classmates
Cards, and written or video messages
Signs of solidarity: t-shirts, wristbands, symbols of support
Honorary memberships (unconditional love and acceptance!)
If it comes from the heart, you cannot go wrong.
It takes a village to raise a child. Caring for a family in a time of strain takes a village in thoughtful action. Accept other’s altruism, love, and kindness when in need; pay it forward generously when you are able.
I am continually awed by the incredible resilience and beauty of humanity, and humbled to be a part of the journey with families. For the moms and dads who have crossed paths with me -- thank you.
Parents voice how much they appreciate Eric and Donald, our hospital's patient liaisons for the operating rooms. Every day, the personable pair, otherwise known as patient ambassadors, tirelessly communicate between the operating rooms and the families in waiting. They check on surgeons' progress and keep families posted on their children's surgeries throughout the day and into the evening.
Families receive information and draw reassurance from our liaisons while we concentrate in the operating room. It is a team endeavor. Caring about parents is a part of caring for children: it is a family journey.
One recent evening, I ran into Eric around the operating rooms as usual, taking phone calls on his hospital phone, waving at passing surgeons, and attending to families - sometimes providing a reassuring nod, sometimes lingering for longer conversations. He has a special way with people, from doctors, nurses, staff, patients, parents to grandparents -- everyone.
I set out to interview Eric, and learned more about the story behind the wonderful ambassador.
Me: Eric, you are a terrific "people-person". You keep track of my patient's families, try to keep them from worrying too much, and make sure they are informed. You always help me find them right after surgery so I can speak with families in person. You are clearly so dedicated to this job. Why do you do what you do?
Eric: I love my job. I get to help people and make a difference every day, in any way I can. I have personal experience, so it is meaningful to me and makes me work even harder. I can understand what families are going through.
Four years ago, my wife and I were waiting in a hallway at an unfamiliar hospital for 15 hours while our daughter was in surgery. She was in a trauma and had to undergo emergency surgery. We were so worried, so alone. We had no idea what was going on, It was horrible. I do not want any parent to ever, ever have to have that experience. We went through it, and I will not let that happen to anyone else as long as I am here.
Me: Eric, we had no idea. It seems this job was made for you. Have you shared your story? Did you create this job?
Eric: It just happened. My daughter's surgery happened 4 days before I was offered this position. It was a new position, created by the administrators of the operating room and the perioperative services. I did not know it was in the works. I had been working as a patient care assistant in the recovery room at Texas Children's Hospital for 13 years. They came to me 4 years ago, and said they noticed I am good with people. I get along with everyone, from patients, nurses, doctors, to administrative staff. I speak English and Spanish, which they said was something that was needed to work with our population at TCH. When they described what they had in mind for this brand new position of Patient Ambassador, of course I said "Yes"!
Me: That is amazing how everything came together. They certainly chose the right person. I admire the administrators who had the foresight to understand the importance of communication. Keeping families informed on the day of surgery with a human touch means a lot,
My patient's mom recently told our parent support group that you made all the difference in the world to her on the day of surgery, Eric. You kept her up to date; you had physically been in her baby's operating room and could tell her that things were going smoothly. That meant so much more than a computer screen telling her surgery was "in progress". I wanted to let you know that your work touches our families.
How do you know what to say to people in stressful situations? Did you get special training?
Eric: I don't have a system. I meet people at their level and respond to their needs. Everyone has a different story, a different style. I just listen and feel where they are coming from. Whatever they need, I try to make it happen.
Me: Eric, you have a special gift with people. We are lucky that you love what you do. I can't think of a better person to be our patient ambassador.
Eric: I am lucky. I won't take it for granted. I always remember those 15 long hours waiting for my daughter's surgery, and I won't let that happen to anyone as long as I am around. And I get to work with such great doctors and nurses. Like I said, I love my job.
Me: Wow. I am so glad we had this chat. Thank you for all that you do, Eric!
There are so many details for parents to deal with during the stressful time leading up to surgery. Our hospital has a worksheet to summarize when and where to show up for surgery, and what to expect.
Parents mentioned it would be helpful to have this information in advance. In response to that request:
Here is an example of our Pre-Surgery Instructions worksheet (download here)
Helpful information on when to stop eating and drinking in preparation for anesthesia is listed. At our hospital, the pediatric anesthesiologists currently use these guidelines:
No solid foods, gum, or hard candy after midnight the night before surgery.
OK to have milk or formula up until 6 hours before your scheduled arrival time.
OK to have breastmilk up to 4 hours before the scheduled arrival time.
OK to have clear liquids until 2 hours before your arrival time.
Q: What is a "clear liquid"?
A: Water, Pedialyte, Sprite or 7-up, apple juice. (no orange juice)
Continue taking all prescribed medications prior to surgery unless otherwise specified.
Every hospital and surgery practice is a bit different, so make sure to follow your doctor's instructions. We know it is challenging to soothe a hungry child; the empty stomach guidelines before anesthesia are strictly in place for patient safety. At our hospital, we try to have the younger patients be scheduled earlier in the day, and to titrate when it's OK to allow certain types of drinks counting backwards from surgery time.
The operating room schedule changes sometimes, and we try constantly to make it all work out. Bless every parent and child for their patience, courage, and trust. Thank you.
Parents often ask what to bring to the hospital when their child is having surgery. I set out to find answers from the best source: parents of my patients helped generate a suggested packing list for surgery at my hospital. This is developed for parents, by parents who have been through the experience. This particular list is from moms of babies up to 1 year of age:
If you prefer, & other extras
Items provided at our hospital
Pediatric Neurosurgery team
Things we are passionate about
my TCH blog post on
- organizing your medical records for doctor's appointments
- Craniosynostosis 101
our patients' moms blog about their family's
- epilepsy surgery journey
- craniosynostosis surgery journey
some of our inspiring patient and family stories in the news:
- epilepsy surgery
- craniofacial surgery
Comments on health policy in the #NeurosurgeryBlog
Sharing on the "ask-the-doctor" series on the Children's Craniofacial Association's blog
- helmet FAQs: after endoscopic craniosynostosis surgery
- helmet FAQs: positional plagiocephaly