Chapter 2: Navigating

When you first learn of your child’s diagnosis, you may feel overwhelmed. This is entirely normal. You are not only dealing with your emotions from having a child who has been born with one or more health conditions (see Chapter 1). You are also learning about each condition, its treatment, and the health care system itself.

During this time members of the health care team, in consultation with you, will be making many of the decisions required in the best interests of your child. As you gain confidence in understanding the various aspects of your child’s care, you may feel more self-assured as a member of your child’s team and as an advocate for your child—asking questions, raising concerns, and making suggestions.

To become an advocate for your child, it helps to understand how the team works, how the system works, and how to work within it.

Your child and your family are at the centre of the team. In addition to your personal support team, your health care team assists you. Each member of your health care team has a role to play. This chapter goes over working with your health care team, asking for a second opinion, and knowing who to call and when.

Working with the health care team

Your health care team is made up of

• nurses (ward nurses, nurse clinicians, nurse practitioners, community health nurses),
• physicians (family doctors, pediatricians, medical and surgical specialists),
• allied health specialists (dieticians, social workers, child life specialists, respiratory therapists, physiotherapists, technicians, pharmacists, chaplains),
• students in all health care disciplines.

The roles between professionals may be confusing and may overlap. Do not hesitate to ask any team member to describe their specific role and how it fits within your child’s plan of care. See also “The health care team” section of the glossary for more details of roles.

The types of team members may change over time as your child grows or their care needs change. This can sometimes be challenging since relationships and bonds form. You can expect some professionals may be involved for a short time, while others may be involved for many years.

The support of the team can be very helpful for the many challenges parents face in caring for their child. It can also help parents feel less isolated in dealing with the special needs and demands of their child’s condition. For example, your child’s health care team and the clinic’s social worker can offer help with finding resources and coordinating care, especially if your child has multiple needs. (See also publications, support groups, and community resources listed in “Building your support team” in Chapter 1.)

A good team relationship

Teams work best when everyone works together.

The relationship works when it is

• on equal grounds,
• an honest relationship on both sides,
• respectful of each other.

This means

• you and the team both have important contributions to make;
• you need to be able to trust the information from the health care team;
• the team must be able to rely on the information you give about your child;
• you respect the team’s expertise;
• the team respects you as caregivers with valuable concerns, rights, cultural traditions, and suggestions about your child’s care and treatment.

Good communication is a must. You can do your part by preparing for each visit:

• List your questions for the team.
• Anticipate as much as possible the questions your health care team will ask of you.
• State clearly what you believe is in the best interests of your child and your family.
• Provide information on things happening in your family that might affect your child (for example, financial stressors).
• Inform each health care professional involved in your child’s care about the other team members your child has seen.
• Be prepared to listen and ask questions.

The challenges of a team relationship

It takes time and practice to learn ways of working with the members of the health care team.

Some parents feel uncomfortable when they are not in control. It can be difficult to let others manage your child’s care, especially if you don’t understand what is being done.

Sometimes being part of a team means letting others take charge. As you build your health care team and gain trust in them, you may grow more comfortable with allowing the team the control they need to care for your child.

When you first learn of your child’s condition, you may know very little about CHD and the health care system. The more you learn, the more effective you will be as an advocate for your child. You can gain this knowledge by reading, talking to others, and asking questions.

Sometimes your concern for your child may make you very emotional. It is natural to react strongly to anything that may seem like a threat to your child’s well-being. Don’t be hard on yourself.

Pay attention to what your body is telling you. If you find yourself feeling unusually anxious or angry, try to speak to someone on your support team before feelings build up into an outburst. Social workers and psychologists can be helpful. Your clinic nurse can help arrange an appointment with a social worker or a psychologist for you.

In some situations, parents may want to change doctors because of how their child’s doctor communicates or provides care. It is almost always a good idea to discuss your concerns with the doctor before making a change.

Asking for a second opinion

Yes, you can ask for more information and a second opinion. Your doctor may not always be able to answer a question right away but has quick access to information. Neither you nor your doctor should feel challenged if you ask for more information.

Second opinions may already be a part of the treatment that your child receives. Ask your cardiologist or nurse if a team of professionals will be discussing your child’s medical condition and treatment options. If this is the case, you are already getting a second opinion.

In an emergency, you may not be able to get a second opinion. Transferring your child to another centre may be medically unsafe or too costly. When a second opinion is not available, you can gain confidence in your child’s care by learning as much as possible about your child’s condition, asking questions, and expressing your concerns.

Knowing who to call and when

Before phoning your health care team, you need to decide which person to call.

Use the form in Appendix B, “A Preparation Guide for Calling with Concerns about Your Child’s Health,” to help you get ready for the call.

For your child’s cardiology appointments

At BC Children’s Hospital
Contact the Children’s Heart Centre office at BC Children’s Hospital:
604-875-2120

At an outreach clinic
Cardiology clinics and more are run in the BC Interior and Northern BC through BC Children’s Hospital Provincial Partners program, and in Surrey through Surrey Memorial Hospital.

Contact these programs through their toll-free number:
1-888-300-3088, extension 3017

At Victoria General Hospital
250-386-4353

For renewing your child’s medication prescription(s)

The best way to renew your child’s prescriptions is to ask your community pharmacy to fax the prescription renewal request to your child’s cardiologist/cardiology nurse practitioner (or to the prescribing family doctor).

In some situations the pharmacist can provide you with a small amount of medication to tide you over until they receive the new prescription.

Fax number for the Children’s Heart Centre at BC Children’s Hospital
604-875-3463

Fax number for Pediatric Cardiology at Victoria General Hospital
250-382-4352

For cardiac health concerns or questions

Cardiology nurse clinician
Nursing office at BC Children’s Heart Centre
604-875-2345, extension 7877
8:00 a.m. – 4:00 p.m., Monday to Friday (excluding statutory holidays)

Nursing office at Victoria General Hospital
250-727-4449
8:30 a.m. – 4:30 p.m., Monday to Friday (excluding statutory holidays)

Cardiac surgery
To address questions about your child’s upcoming surgery at BC Children’s Hospital, please refer to the information in your letter from the cardiac surgical office.

For general health concerns or questions

HealthLink BC’s 811 phone line
This free-of-charge service is available 24 hours a day and provides health information and advice. You can speak to a health service navigator, who can help you find health information and services. This navigator can also connect you directly with a registered nurse, a registered dietitian, a qualified exercise professional, or a pharmacist.

To use this service, call 811.

Your family doctor or pediatrician
Family doctor/pediatrician phone number: _________________________

For emergencies

If your child needs help right now, call 911 or go to your nearest emergency department.

For serious, time sensitive, non-emergency cardiac health concerns

Use these phone numbers only for cardiac medical issues that cannot wait until cardiology clinic office hours. For all other concerns, please wait to speak with the cardiac nurse clinicians who can consult your child’s primary cardiologist.

BC Children’s Hospital
If your cardiologist is at BC Children’s Hospital, contact the cardiologist on call:
604-875-2161

Victoria General Hospital
If your cardiologist is at Victoria General Hospital, contact the pediatrician on call:
250-727-4212

» Go to Chapter 3: Learning