The Pediatric Hand Team is comprised of health care professionals who work together to provide the best care possible for your child and your family. This page introduces the health care professionals you may meet, describes their unique role, and provides example questions to help you speak to each professional’s area of expertise.
Hospitals structure their teams differently. You may or may not interact with all of the team members listed on this page. Here at Shriners Hospitals for Children – Northern California, you will likely work with the Pediatric Hand Team lead by Dr. Michelle James and Dr. Claire Manske.
Pediatric Hand Surgeon
Pediatric hand surgeons specialize in congenital and acquired hand, arm, and shoulder conditions. They are the leaders of the Pediatric Hand Team. Surgeons will meet with your child and your family and assess the current function in your child’s hand. They will also assess functional activities your child and your family want your child to be able to do. From there, the surgeons will discuss surgical intervention options if appropriate and / or refer to therapeutic or prosthetic / orthotic interventions to maximize your child’s hand function. If your child doesn’t need surgery, or if you and your child choose not to have surgery, pediatric hand surgeons can continue to follow your child with ongoing assessments and discussions regarding any issues that arise. Many children with hand differences visit pediatric hand surgeons for many years without ever needing surgery.
Surgeons are dedicated to education and research and have ongoing research studies in surgical intervention best practices, motion analysis, hand function assessments and evaluation tools, and long-term follow-up of results of interventions. They may also participate in a registry of children with congenital hand differences. More information on research at the Shriners Hospitals for Children – Northern California can be found here.
When meeting with your pediatric hand surgeon for the first time, it is helpful to ask a few questions to establish a united set of expectations.
In addition to anything you are curious about, a few examples of questions to ask are:
- Is my child going to be able to do the same activities as other children, and if not, which activities might be challenging for them?
- What should I do if someone teases my child or treats them differently because of their hand difference?
- Is my child’s hand difference painful?
If your pediatric hand surgeon recommends surgery, here are examples of questions to ask:
- Have you ever done this operation before? How many times? What were the results?
- How will this operation change my child’s hand? Will it work differently? Will it look different?
- Can I meet another patient of yours who had this surgery?
- Where will the scars be? What will they look like?
Geneticists are pediatricians who specialize in diagnosing inherited and inheritable conditions. A geneticist will ask lots of questions about your family history, examine your child, and may obtain genetic tests to help make a diagnosis.
There are three reasons to see a geneticist.
The questions to ask the geneticist that will help you better understand these reasons are:
- Does my child have a syndrome?
A syndrome may indicate that your child has a condition(s) in addition to their hand difference that may not be as easy to diagnose. If this is possible, the geneticist may order lab tests or other tests.
2. Is my child’s condition inherited?
When a child has an inherited condition, a new sibling of the same parents could have the same condition.
3. Is my child’s condition inheritable?
When a child has an inheritable condition, his / her children could have the same condition.
Pediatric hand teams include anesthesiologists who take care of children (pediatric anesthesiologists). If your child is having surgery, it is very important that the anesthesiologist assigned to your child is a pediatric anesthesiologist, because children may react differently to anesthesia than adults. All of the anesthesiologists at Shriners Hospitals for Children – Northern California are pediatric anesthesiologists.
Questions to ask your pediatric hand surgeon and pediatric anesthesiologist about surgery include:
- What type of anesthesia will you use?
- What are the risks of this anesthesia?
- How will you control my child’s pain after surgery?
Advance Practice Providers
Advance practice providers (APP) are medical professionals who work collaboratively with surgeons to provide well-organized, cohesive care both in the hospital and clinic setting. APPs are facilitators of multidisciplinary care. This means they help ensure that the growing child is receiving the individualized care needed to assist them in achieving developmental milestones. The goal of an APP working with children with congenital limb differences is to support the growth of each child functionally, physical, mentally, and emotionally.
In addition to anything you are curious about the following a few examples of questions to ask are:
- How will a limb difference affect my child achieving developmental milestones?
- Will there be anything my child is not able to do?
Nurses are licensed professionals who provide care by treating the whole patient physically, mentally, socially, and spiritually. Nurses give round the clock care in the hospital setting. They provide pain management, comfort measures, and distraction while monitoring your child’s status to keep her/him safe to facilitate recovery. Nurses can give advice, coordinate care, and assist with removing barriers that may prevent the best possible outcome for your child.
Nurses provide care in the outpatient clinic and in the hospital. There is also a nurse with your child at all times during a surgical procedure.
Nurses provide education to both patients and families. They clarify and reinforce information and instructions provided by the child’s physician, and identify and recruit other support services when needed, such as a Child Life Specialist.
Nurses are a resource for parents who are nervous and have questions about their child’s condition or proposed surgery.
When talking to your nurse, do not feel that any question is silly or insignificant.
Sample questions your nurse can answer include:
- What can I expect when my child is going to have surgery?
- How can I help my child prepare for and recover from a procedure?
- Can you tell me about other families who have gone through this and how they have coped?
Occupational and Physical Therapists
Occupational and Physical Therapists work together as a rehabilitation team to support developmental mobility and maximize function. For children born with the absence of a hand or arm, therapists are available to assess and treat their unique needs.
Occupational therapists (OT’s) are Rehabilitation Professionals who assess children, their current abilities, and their potential for increased function. OT’s then explore strategies to help children be as independent as possible in the daily tasks they want to do as they grow and develop. They may have additional training in hand therapy (Certified Hand Therapist).
Occupational therapists work with families to develop creative solutions that modify the environment or task; these modifications and adaptive devices help maximize participation and independence in tasks important to a child.
If your child has surgery, Occupational Therapists can assist in rehabilitation programs and interventions to ensure the best movement after the surgery and prevent injury to the surgical location. OTs may also create custom splints to support participation in tasks that require custom modification and prevent injury after surgery.
Depending upon where you access therapy, you may work with a physical therapist or an occupational therapist.
When talking to your therapists, do not feel that any question is silly or insignificant.
Sample questions to ask your Occupational and Physical therapists include:
- My child wants to play an instrument and is having a hard time holding on to it, can we work on that today?
- What movements can my child do once we go home after surgery? For how long?
- How often do we need to do these exercises at home, what happens if my child doesn’t want to?
Prosthetics and Orthotics
For those who may have an absence of a hand or arm, prosthetics can sometimes bridge a functional gap. Prosthetics can be made to help with activities from balanced crawling and holding a bottle, to climbing monkey bars, participating in sports, and playing a wide variety of musical instruments. Some individuals choose to wear their prosthesis from morning to night every day. Most choose only to wear them only to help with specific tasks. Many find wearing no prosthesis at all is the best option. Some prosthetics look similar to a natural hand and arm. Others have more interesting and functional shapes and can be covered with unique designs, cartoon characters, or superheroes!
At Shriners Hospitals for Children – Northern California, each prosthetic design is as unique as each child’s personality and specific functional needs. Children are seen and followed-up by our doctors and rehabilitation team members to develop a customized treatment plan. We continue to follow up year-by-year to make sure devices continue to fit, and the design is continually updated to remain functionally relevant to each child as they grow.
When meeting with a prosthetic specialist, the prosthetist (Pros-the-tist) for the first time, it is helpful to ask a few questions to establish a united set of expectations.
In addition to anything you are curious about, a few examples of questions to ask are:
- What has been your experience working with this specific amputation level?
- What are the pros and cons of the various design options for a prosthesis at this amputation level?
- What is my payment responsibility for the initial prosthesis and any needed follow-up? *At Shriners Hospitals for Children – Northern California, children are treated without regard for the ability to pay.
Lastly, remember that your happiness with, and the usefulness of a prosthesis will be directly related to the expectations and design decisions you and your prosthetist make, quality of the work they provide, and the effort that you and your child make to use and wear the device. You should expect the prosthesis to be a fun, comfortable, and useful tool.
Clinical Social Worker
A licensed clinical social worker (LCSW) is part of your treatment team. Having a child with a medical concern can, at times, be stressful for both parent and child. Your child’s overall well-being is an important outcome for any medical care provided. Your social worker acts as your liaison with the medical team to provide information important to this outcome. They may talk with you about school and home environments, financial matters, or other concerns you have to develop a plan of care with your medical team.
Your social worker can help support you and your child with any emotional and social concerns you may have. Our goal is to help with adjustment to the medical condition that may be affecting your child’s daily function and to ensure your family has supports in the community to maintain your child’s health. Support can include being an advocate both in and out of the hospital setting. Assistance can include addressing barriers to access to health care and referrals to community resources. We often are the liaison between the family and community services. Social workers can assist you with employee paperwork (FMLA and Paid Family Leave), referrals for transportation to/from hospital for appointments and lodging issues.
If you find you need help with community resources or managing with the impact of the medical issues, please ask to speak with a social worker.
Questions you may want to ask us so that we can better help you and your child:
- The doctor is recommending occupational therapy, what are my options in getting this service?
- My child will be starting school, are there resources at the school that can help my child be successful in the educational setting?
- How will my child handle social issues? Is there anyone we can speak with who can share their experience?
Child Life Specialists
Child life specialists work with your child if there are concerns around surgery. They help to ease anxiety and create a positive environment. Child life specialists will bring in surgical related materials and dolls to help describe the surgery and what to expect after. They allow children to explore materials, such as stethoscopes, casting materials, and bandages, to increase their comfort while allowing them to talk through their anxieties and questions.
Transition Care Coordinators
Transition at Shriners Hospitals for Children – Northern California is more than preparing and assisting adolescents, young adults, and their families from pediatric to adult health care providers. Our transition plan starts on their first visit to the clinic or hospital and is integrated with all staff considering the whole child. Transition is in school, sports, and recreation, hobbies, living environment, work, and community. Information and awareness to families about community resources are provided and encouraged as developmentally appropriate.
Questions to ask your Transition Care Coordinator:
- What resources, adaptations, or accommodations should my child’s school be providing?
- My child’s school is not providing resources to assist him/her in being successful. What do I need to do to request services?
- What would be a viable career that would be interesting for me with my physical abilities?
For questions, comments, or concerns please email firstname.lastname@example.org
Page last revised on August 27, 2019