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
It could have been a huge birthday party on May 14th, 2016 with children and their families playing and socializing amidst superhero games and decorations. Instead, they were honoring something else: families’ journeys through craniosynostosis care at Texas Children’s Hospital. Over 120 people attended the annual Craniosynostosis Reunion to share, connect, and celebrate.
Children who have had craniosynostosis surgery played alongside siblings and friends. Child Life Specialists from Texas Children’s had the children engaged in fun-filled games. Among the children dressed in comic book superhero t-shirts and assorted capes, a number had healed scars from craniosynostosis surgery barely visible in their hair. Parents and grandparents shared stories and support with each other. Mainly, they shared laughter and love as they looked on at the children’s fun and games.
To spread the sentiment of hope and support forward, attendees wrote positive affirmations on ribbons to be donated to CranioCareBears national care packages distributed to families for their surgical hospital stay. A mom explained how meaningful it was to her: “I remember when we received our care package prior to our surgery date…. I was so touched by the warmth of strangers united by craniosynostosis. I can’t believe I get to make something for other families now.”
At TCH, the comprehensive multidisciplinary craniosynostosis surgery program has care organized around the patients’ needs, so pediatric neurosurgery and plastic surgery specialists see the patient together in addition to genetics, ophthalmology, social work, anesthesiology, and otolaryngology services as part of the coordinated care. TCH is one of the largest craniosynostosis programs in the region and the country, offering a spectrum of treatment strategies including minimally invasive surgery and complex reconstructions. Surgery plans are made with the goal of doing the best surgery for the individual patient at the right time. While many families come for the reputation, large experience and comprehensive care offered at TCH, most say they would not go anywhere else after meeting the practitioners and staff.
The program recognizes the importance of caring for the whole family in addition to the patient. Parent support groups are hosted at TCH, while parents also actively connect with each other online. Services for families are continually improved by direct feedback and design from the Family Advisory Board, made up of parents of children with craniosynostosis.
“It’s so important for our children to know they are not alone, and to grow up knowing other children who have gone through similar experiences. It is incredibly helpful for siblings. We are so blessed to be part of this big family. We just think it’s wonderful to have events like this for kids and families,” said one of the mothers, whose son recently reached one-year milestone after his surgery for craniosynostosis.
Stephanie Gibson, a nurse from our neurosurgery ward, was volunteering at the event. Families recognized her from their hospital stay. She reported it was inspiring to see that her work made such a difference in the patient’s and families lives, and to see them outside of the hospital, all healed, in their natural playful element. We could not think of a better way to mark the end of national Nurse’s Week.
I personally believe it is a privilege to take care of children. We are lucky to be able to support and connect patients and families in a meaningful way, beyond surgery. Also, it is such fun to engage our care team in this annual event. Seeing these children and families reminds us why we go to work and do what we do every day.
Laura Monson, pediatric plastic surgeon and co-director of the craniofacial surgery program, agreed wholeheartedly. She brought her husband and daughter to the event to celebrate along with her patients. My other craniofacial surgery colleagues Edward Buchanan and Robert Dauser also came to the event and enjoyed seeing their patients in such a great setting.
Many dedicated TCH staff and volunteers were mobilized for this event. A special treat was Steve Odom, a Houston area professional photographer who takes pictures of rock stars in his “day job”: he graciously volunteered his services for this special TCH event for the children.
All in all, the TCH Craniosynostosis Reunion was a resounding success. As the event drew to a close, an older boy in a super-hero mask and cape jumped up and exclaimed, “That was awesome! When can we do this again?”
See you next year!
For more pictures, visit the Houston Cranio Families facebook group.
Question: What is the best way to clean the helmet?
Answer: Due to a combination of sweating, infant "cradle cap", and bacteria, the helmet may have an unpleasant fragrance over time. Helmets that have soft foam spacer pads applied at the neck or forehead, we recommend utilizing Isopropyl alcohol applied to a towel and lightly scrubbing the inside and outside of the helmet daily. Please make sure to not let the alcohol touch the small crescent shaped pads as the pads will release from the helmet. If the helmet does not have the pads listed above, we recommend applying a small amount of antibacterial dish soap to a wash cloth and clean the helmet gently and without submerging. Rinse the helmet thoroughly and set in front of a fan for approximately two to three hours so the helmet can dry. Please do not wash the more than one time per week. If cleaning the helmet once per week with dishwashing soap, we also recommend cleaning the helmet daily with alcohol to keep the helmet sanitary. Please refrain from using scented alcohol as this can cause skin irritation.
Question: Why does my child sweat so much while wearing the helmet?
Answer: Children have a high metabolism and it is common for excessive sweating to occur throughout helmet treatment especially during the summer months in Texas. We recommend keeping your home at 74 degrees Fahrenheit or below and to have a fan on in the room to keep the air circulating. When traveling in a car it is a good to cool the car down before placing the child into their seat.
Question: Why are there red marks on certain areas of my child’s head after I have removed the helmet?
Answer: Because the helmet utilizes pressure to shape the head as it grows, some red marks are to be expected throughout the treatment. However, if the skin is red accompanied by raw or moist skin, contact your orthotist and arrange for an adjustment to the helmet.
Question: Why can’t the helmet adjustments be made in the clinic at Texas Children’s Hospital?
Answer: The helmet is made of medical grade materials that require specialized machines and tools utilized by the orthotist. As a result, the helmets must be adjusted offsite at the orthotist clinic.
Question: Why does the helmet need to be worn 23 hours per day?
Answer: The helmet acts as a shape-mold with a predetermined shape so the various pressure points and empty space guides the child’s natural brain and skull growth into a symmetrically shaped head. Children at such a young age grow rapidly and sporadically, so to insure the optimum correction the helmet must be worn at all times except during bathing.
Helmets being used AFTER SURGERY
Question: When will we be done with the helmet?
Answer: While the clear helmet is primarily for infants right after endoscopic craniosynostosis surgery, most babies experience rapid head growth when they are several months old. Thus they are expected to outgrow their first clear helmet and are usually fitted with a new foamy patterned helmet over time. Patterns can be chosen for this bigger foamy helmet. See some helmet pattern design options here. Patients are seen on a monthly basis at the craniosynostosis surgery clinic to monitor for healing, growth, milestones, and head shape development. Most patients are in the helmet for 4-6 months (sometimes up to 8 months) after surgery, and as each person is different, the surgery team needs to evaluate the child every month to monitor progress and healing to determine when is the right time to come out of the helmet.
Helmets for POSITIONAL PLAGIOCEPHALY (such as head shape deformity due to sleep position)
Question: When will we be done with the helmet?
Answer: Infants have rapid head growth up to 12 months of age, then the rate of growth starts to slow down. For instance, by age 2, toddlers have usually attained 80% of their future adult head size.
The helmet helps to encourage the infant’s natural head growth to happen more in the areas that are flat from positioning as an infant, and to grow less in the areas that are already prominent. The helmet holds more tightly where infants’ heads are “bulgy”, and the helmet has extra space where we want to direct the head growth preferentially. The helmet does not push the skull back into shape. Rather, it gently encourages the infant’s growth to happen in a certain direction where they need to round out.
Patients are seen on a regular basis at the head shape clinic to monitor for helmet fit, milestones, and head shape development. Most patients are typically in the helmet up until 12 months of age, adjusted for prematurity. The head shape clinic team led by Dr. Thomas Luerssen evaluates each child regularly (usually every 6 weeks for the diagnosis of positional plagiocephaly or positional brachycephaly) to monitor progress and to determine for each individual child when is the right time to come out of the helmet.
Remember, this information cannot substitute for regular visits with the orthotist and the doctor to avoid any potential problems and to work toward the best outcomes possible. I hope this FAQ is helpful!
Thanks to Jim Brookshier for experienced helmet wisdom.
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
- AVM surgery
Cross-post & links to my posts on other sites
Updates on pediatric cerebrovascular disease in #NeurosurgeryBlog
Comments on health policy, pediatric neurosurgery, and the Affordable Care Act 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