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Fetal Cardiology Resource and Education

Stollery Fetal and Neonatal Cardiology Program Based at the Royal Alexandra Hospital Information for families referred to the Stollery Congenital Heart Program when diagnosed before birth REVISED APRIL Fetal 2018 Cardiology Resource and Education 1


Table of Contents

4

HEART TO HEART

Heart to Heart . . . . . . . . . . . . . . . . . . 5

6

MY BABY HAS A HEART CONDITION. NOW WHAT?

22

THE DECISION TREE

Will My Baby Survive? What Are My Options? . . . . . . . . . . 23

26

NEXT STEPS FOR CONTINUING PREGNANCIES

The Diagnosis . . . . . . . . . . . . . . . . . . 7 Why Us? . . . . . . . . . . . . . . . . . . . . . . 9 How is My Baby’s Heart Different? . 11

How Will This Affect My Delivery Plan? . . . . . . . . . . . . . . . . . 27 My Hospital Admission . . . . . . . . . . 28 My Baby’s Hospital Admission . . . . 30

14

WE WILL BUILD A TEAM AROUND YOU

Teams and Roles . . . . . . . . . . . . . . 15 Medical Genetics . . . . . . . . . . . . . . 18 Will CHD Impact My Child’s Learning and Development? . . . . . . 21

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My Discharge from Hospital . . . . . . 33 Joining My Baby in the NICU . . . . . 35 Follow-up for Me and My Baby . . . . 37


Resources . . . . . . . . . . . . . . . . . . . 50

40

LOOKING AND PLANNING AHEAD

Fetal and Neonatal Cardiology Resources . . . . . . . . . . . 50 Peer Support . . . . . . . . . . . . . . . . . 50 Resources Outside of Edmonton . . 51

How Can I Get the Support I Need? . . . . . . . . . . . . . . . 41

Financial Supports . . . . . . . . . . . . . 53

Information Overload . . . . . . . . . . . . 43

Post Natal and Home Care Services . . . . . . . . . . . . . . . . . 56 Counseling Services . . . . . . . . . . . . 57

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Infant/Perinatal Loss . . . . . . . . . . . . 58 RESOURCES

Community Bereavement Supports . . . . . . . . . . . . . . . . . . . . 59 Spiritual and Cultural Supports . . . . 60

Contact Numbers . . . . . . . . . . . . . . 45

Parenting Support . . . . . . . . . . . . . 61

Maps/Buildings/Parking . . . . . . . . . 46

Basic Glossary of Terms . . . . . . . . . 62

Copyright © (2018) Alberta Health Services. This material is protected by Canadian and other international copyright laws. All rights reserved. This material may not be copied, published, distributed or reproduced in any way in whole or in part without the express written permission of Alberta Health Services (please contact The Stollery Congenital Heart Program at 780-407-3952). This material is intended for general information only and is provided on an “as is”, “where is” basis. Although reasonable efforts were made to confirm the accuracy of the information, Alberta Health Services does not make any representation or warranty, express, implied or statutory, as to the accuracy, reliability, completeness, applicability or fitness for a particular purpose of such information. This material is not a substitute for the advice of a qualified health professional. Alberta Health Services expressly disclaims all liability for the use of these materials, and for any claims, actions, demands or suits arising from such use.

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Heart to Heart

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Modern healthcare can tell you many things about your unborn baby. But being told your unborn baby has a problem with his or her heart can be shocking, frightening and unexpected. Your healthcare team recognizes this as a very emotional and upsetting time. We are here to extend our support to you. You may be asked to consider choices for your pregnancy or treatment for your baby, even before your baby is born. Sometimes there is no clear answer. Choices about your pregnancy are very personal. Sometimes your decisions can be

influenced by family circumstances and supports. For some families, talking with a spiritual care provider, a Social Worker, or a Psychologist can be helpful. This booklet is designed to help you understand your baby’s heart and the options and possibilities for both you and your baby. It also contains practical information you may find useful about our service and other resources available to you. We are committed to providing you with the information you need to feel supported during this difficult time.

Pregnancy is usually a time of Excitement and anticipation Plans and preparation Hopes and Dreams Now this precious time has been interrupted by Concern about your baby’s heart Waiting for tests and information Worry and anxiety Knowing but not knowing is Experiencing uncertainty Balancing concerns Rethinking your dreams © Knowing but not Knowing, 2014 BCCH Fetal Cardiology Resource and Education 5

HEART TO HEART

Heart to Heart


My Baby has a Heart Condition. Now What?

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There are many different heart defects that a baby may be born with. These are known as Congenital Heart Defects (CHD). Some are minor defects in the structure of the heart which may not need treatment at all. Other more serious defects can often be corrected with an operation. Very severe congenital heart defects sometimes require several operations so that your baby may live with the best quality of life possible despite the fact that there may not be a cure. In addition to structural defects, some babies have a problem before birth with the function or pumping of the heart muscle (cardiomyopathy) or with their heart rhythm or beat. Some Commonly Asked Questions What is a prenatal diagnosis? Prenatal means “before birth.” A prenatal diagnosis is an illness or problem that is discovered about your baby’s health before they are born. You might also hear it referred to as “antenatal” or “fetal”. All of these mean the same thing: before birth. What is a congenital heart defect (CHD)? Congenital is the word used to describe health problems that are present at birth. The heart is completely formed by the 8th week of pregnancy. If the heart has not formed properly, the baby will be born with a congenital heart defect. You may also hear CHD referred to as a lesion, abnormality, or malformation. Heart defects can range from a tiny hole that requires no treatment, to structural problems that are not compatible with life. What causes congenital heart defects? There is no single cause for CHD. For the majority of CHD, no one knows what caused them. You may hear “multifactorial causation” regarding your baby’s heart defect. This means that no one particular thing caused the problem, but rather a combination of possibilities like certain genetic and environmental factors that occurred at the same time. In Canada, six to eight of every 1,000 babies have a heart defect (less than one percent of all babies born). About one third of these babies have a severe cardiac defect requiring medical or surgical treatment. If you have a close family member with CHD, the chance of having a baby with CHD increases from one percent to about three percent and in some cases higher. Because heart defects mostly happen by chance, or when different factors occur at the same time, the majority of parents with a baby who has CHD are healthy and the diagnosis is unexpected.

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MY BABY HAS A HEART CONDITION. NOW WHAT?

The Diagnosis


What is a fetal echocardiogram (echo)? Fetal, or fetus, refers to a developing baby. An echocardiogram (echo) uses ultrasound to take pictures of the heart. Taking ultrasound pictures of a developing baby’s heart is called a fetal echocardiogram. Having a fetal echo feels similar to having an obstetrical ultrasound. Instead of looking at the whole baby, it looks just at the baby’s heart. A fetal echo shows the parts of the heart (structure), how the fetal heart is working (function), and how it is beating (rhythm). Heart problems can be diagnosed as early as the first trimester, but a more detailed evaluation is always encouraged in the second trimester. A specialized heart doctor called a Fetal Cardiologist will closely review the fetal echo and will talk with you about what the echo showed. The doctor will explain what this means for you and for your baby. You will probably have more fetal echoes throughout your pregnancy to monitor the baby. Who can answer questions about the baby’s heart diagnosis BEFORE they are born? Before your baby is born, the Fetal Cardiologist will be there to answer your questions about your baby’s diagnosis. Who can answer questions about the baby’s heart diagnosis AFTER they are born? After your baby is born, a Pediatric Cardiologist (a specialist in children’s congenital heart disease) or a Neonatologist (a specialist in managing newborns with intensive care requirements) will be on your team. They can help to answer questions as you go along. Who can answer questions about my pregnancy? Your family will have the support of a Maternal Fetal Medicine (MFM) Specialist (a specialized doctor in high-risk pregnancy). Your Family Doctor and/or Obstetrician will still be involved in your care.

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Use this checklist to guide you as you discover the answers to some of your initial questions. You may write in the page number where you find the answers, or you can add in your own questions that haven’t been answered yet. What does this diagnosis mean for my baby before and after birth?

How frequently will I have follow-up appointments?

What other problems could my baby have?

How long does a fetal echocardiogram appointment usually take?

What are the options for my pregnancy? Who are the doctors that will tell me about the options for me and my baby?

Do I have any activity restrictions during my pregnancy? Can I still work?

Other questions I have: ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________

Why Us? People often wonder if there is something they did to cause the problem, or if they could have done something differently to prevent it. The vast majority of congenital heart defects are completely unexplained. They often affect families who are otherwise completely healthy. This means that it is very unlikely that the problem could have been prevented. Even heart problems that are linked to genetic or chromosomal disorders do not happen because anyone did anything wrong.

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MY BABY HAS A HEART CONDITION. NOW WHAT?

Checklist of Common Questions


What are the chances of the diagnosis being wrong? Often parents hope that the diagnosis is wrong and maybe their baby doesn’t actually have a heart problem. Once a diagnosis of major CHD is made, your care team is certain that there is a structural defect in your baby’s heart. In the vast majority of cases, the diagnosis made prenatally is completely correct and will not change. A scan performed directly on a baby’s chest after they are born can sometimes give more detail about the condition, but the diagnosis itself rarely changes. If there are any doubts about whether or not a diagnosis is complete, this will be explained to you by your Doctor at your fetal echo appointment. Will this heart problem get better by itself? The fetal heart is fully formed by around the 8th week of pregnancy. This means that when a problem with your baby’s heart is found, it has already been there for some time. Unfortunately, it is uncommon for fetal heart problems to get better on their own. Usually they stay the same and in some cases, sadly, they can get worse. If your Doctor thinks there is a chance that your baby’s heart condition could improve, they will tell you about this. They will also discuss the chances of the heart condition becoming worse, and what this would mean for the pregnancy. Will this happen again? The chance that a CHD will happen again in another pregnancy is usually quite low. Your doctors or genetics team can tell you the risk in your particular case. In general, if you have had one child with a heart abnormality, the risk of having a future baby with a heart abnormality is around three to five percent. This means that the vast majority of families will not have heart problems come up again. When planning future pregnancies, it is always important to discuss your risks, and ways to stay healthy, with your Doctor, genetics professional or other healthcare provider. Are my other children okay? Your other children will have been examined by your Family Doctor and probably other doctors on many occasions. It is extremely likely that, if your other child’s examination has been normal, everything is absolutely fine. If a doctor is worried that there could be a risk of your other children having a heart problem, they will let you know and arrangements will be made to have your other children assessed by a Cardiologist.

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In order to better understand your baby’s heart, it helps to understand the structure and function of a normally developed heart. The normal heart has: Four chambers • Two upper chambers (right and left atria).

• Two lower pumping chambers (right and left ventricles).

Four valves to keep blood moving through the heart in the right direction • Two inflow valves called the mitral valve and the tricuspid valve. These control the direction of blood flow from the atria to the ventricles.

• Two outflow valves called the aortic valve and the pulmonary valve. These control the direction of blood flow out of the ventricles.

Two great arteries • The pulmonary artery carries blood to the lungs for oxygenation.

• The aorta carries oxygen rich blood to the body.

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MY BABY HAS A HEART CONDITION. NOW WHAT?

How is My Baby’s Heart Different?


Reprinted with permission Š 2018 American Heart Association, Inc.

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MY BABY HAS A HEART CONDITION. NOW WHAT?

Your Doctor may use this space to draw the structure of your baby’s heart:


We Will Build a Team Around You

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Fetal Cardiology Team Fetal/Pediatric Cardiologist A Fetal/Pediatric Cardiologist is a doctor who has taken extra training in caring for fetuses and children who have heart problems. The Fetal Cardiologist reviews all the fetal echocardiograms. If the pictures obtained do not provide enough information, they may take more pictures to clarify what they see on the fetal echocardiogram. The Fetal Cardiologist will tell you about your baby’s heart diagnosis, your options regarding your pregnancy, and what treatment options are available before and after the baby is born (also called counseling). Fetal Echo Fellow A Fetal Echo Fellow is a Pediatric Cardiologist who is taking extra training under the supervision of a Fetal Cardiologist so that they can care for fetuses with heart diagnoses. A Fetal Echo Fellow may perform the fetal echo, which will be reviewed by the Fetal Cardiologist in charge. Fetal Echo Sonographer A Fetal Echo Sonographer is a person who is trained in ultrasound imaging and, in particular, taking ultrasound pictures of a fetus’ heart. They will perform the fetal echo and then the Fetal Cardiologist will review the pictures and sign off the report. Fetal Echo Sonographers can take images of the heart, but they do not make the diagnosis. Research Nurse Coordinator This is a Registered Nurse who assists with coordination of the research projects in the Fetal Echo Clinic. The Research Coordinator will discuss the active research projects in detail with you and, if you are interested in participating, they will obtain your written consent. They will work with you to coordinate research related activities, exams, or follow up as required. Participating in research is completely optional and will not affect the medical care you receive. Fetal Cardiology Clinic Nurse This is a Registered Nurse who will provide education and support to you as you learn about and adapt to your baby’s heart condition. The Fetal and Neonatal Cardiology Program Nurse will help coordinate your care with other members of your care team and will be a great contact point for any of your questions or concerns.

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WE WILL BUILD A TEAM AROUND YOU

Teams and Roles


Maternal Fetal Medicine (MFM) Team MFM Specialist An MFM Specialist (sometimes called a Perinatologist) is a doctor who has extra training in high-risk pregnancies. A pregnancy is classified as higher risk when either the mother or the baby has a condition that requires extra monitoring. You will see an MFM Specialist in the MFM Clinic for management during your pregnancy. You will continue to see your Obstetrician, who will coordinate the plans for your delivery with your entire team. MFM Nurse The MFM Nurse is a nurse-patient liaison for all high-risk patients being followed closely during pregnancy in the MFM Clinic. The MFM Nurse works with the entire MFM team to coordinate your care and is a resource person for you and your family. MFM Sonographer The MFM Sonographer is an ultrasound technologist who takes complete obstetrical ultrasounds (not just the heart) in the MFM Clinic for fetuses with high risk factors. In fetuses with heart defects, ultrasounds will be performed to determine whether any other organs or structures have differences or abnormalities as well. As your pregnancy progresses, ultrasounds will be done to monitor the growth and well-being of your baby. MFM Receptionist This receptionist works in the MFM Clinic and will assist you with your bookings for obstetrical ultrasounds in the MFM Clinic. The MFM Clinic is a highly specialized clinic providing service to all of Northern Alberta. Wait times in the clinic can be difficult to estimate and often run over two hours. Please allow extra time to find parking, arrive on time for your appointment, and come prepared. You are encouraged to bring snacks, to empty your bladder, and to stay well hydrated.

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Neonatologist A doctor who has specialized training in the diagnosis and treatment of disorders in newborns. Social Worker Social Workers are a part of the healthcare team and can help to address concerns about things like arranging housing in Edmonton prior to and after delivery. They can connect you to community resources and assist with practical issues such as transportation and applications for funding support. They will get to know you and assess your family’s needs so they can advocate on your behalf. Reproductive Mental Health Therapists This is a team of Psychologists who can provide counseling and support to families who have a heart diagnosis in their fetus. See resource section for more details about how this team can help you and how to contact them. ASSIST Team The specialized pediatric palliative care team at the Stollery is called ASSIST (Aid for Symptoms and Serious Illness Support Team). This is a team that focuses on supporting families who are considering comfort care or palliative care as the plan for their baby. You can meet with this team to learn more about comfort care before deciding if comfort care is the right option for you. If you choose comfort care, this team will work with all your child’s other healthcare providers (e.g., pediatrician, specialists, home care) to give your child and family an extra layer of support. Children and their families may get support from the palliative care team for many years, along with their other medical care. The team is made up of experts who offer: • Support when a child’s CHD is first diagnosed

• Care for a child who is dying at home, in hospital, or at a hospice

• Help making decisions and planning for care

• Grief support for parents who have lost a child

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WE WILL BUILD A TEAM AROUND YOU

Other Care Team Members You May Meet


My Care Team (You may meet more than one person from each specialty) My Fetal Cardiologist is: Fetal and Neonatal Cardiology Nurse is: My MFM Specialist is: My MFM Nurse is: My Local Obstetrician is: My Edmonton Obstetrician is: My Genetics Counsellor or Specialist is: My Social Worker is: Other Support Team Members:

Medical Genetics Some heart problems can be associated with genetic abnormalities in a baby. If your Doctor is concerned that there may be a chance your baby has a genetic disorder underlying their heart defect, then you will be referred to the genetics team to discuss. The overall role of the genetics team is to: 1. Explain, if possible, why a heart problem has occurred in your baby. 2. Help you to understand if there are other expected health or learning issues for your baby.

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3. Help you to understand the chance of this happening again in another baby, another family member, or your baby’s children.


Genetic Counsellors

Health professionals who specialize in explaining genetic testing and disorders to families

Medical Geneticist

Doctors who specialize in diagnosing, counseling and researching rare disorders

MFM Specialist

The obstetricians who can do the procedure to obtain the baby’s DNA if needed

Why is genetic testing being offered? Some CHD can be linked to a genetic disorder. Sometimes a genetic disorder might be suspected when there is a family history of CHD or other abnormalities. Other times, your baby’s diagnosis is the first time the genetic problem has happened in a family. If your baby has CHD, you may have the option of doing genetic testing for the baby. The chance of finding a clear genetic cause is higher in some cases than in others. The probability of identifying a genetic cause in your baby will depend on what type of CHD they have, any other features seen on ultrasound, and any other medical information or family history that is present. Your Doctors will help you understand the specific chance of finding a genetic link in your situation. How is genetic testing done? If you decide to do genetic testing, a sample of the baby’s DNA is needed. This can be obtained in different ways: 1. Chorionic villus sampling (CVS) where a small part of the placenta is taken through the cervix or the abdominal wall. 2. Amniocentesis in which a sample of the fluid from around the baby is collected.

3. Non-invasive prenatal testing (NIPT) which is a newer method and involves a blood test for the mother. There may be additional fees associated with this type of testing. Speak with your Medical Geneticist or Genetic Counsellor to learn more.

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WE WILL BUILD A TEAM AROUND YOU

Medical Genetics Team


Pros and Cons There is a small risk of miscarriage or early delivery associated with some of these procedures. If you do not wish to test during the pregnancy, similar genetic testing can be done by taking a blood sample from the baby after they are born. There are pros and cons to each method of testing, and your Doctor or Genetic Counselor will discuss them with you before you decide. What are they testing for? The genetic sample will be tested for different things depending on the testing method used, the type of CHD diagnosed, and any other information gathered. Samples may be tested for Down syndrome, 22q11 deletion syndrome (DiGeorge syndrome), and other chromosomal and genetic disorders. Some of the test results will come back within just a few days, but many of the tests will take weeks or even longer. What to prepare before meeting the Genetics Team When you meet with the medical genetics team, you will be asked about things such as: • Other children in the family with heart problems or other health issues • Miscarriages in the family or babies in the family who have passed away • People in the family with intellectual disability or other developmental delay

• Your family’s ethnic origins (where your family is originally from), and whether you are from a specific ethnic group like Mennonite, Hutterite, Ashkenazi Jewish, French Canadian, etc.

Is genetic testing right for me? Genetic consultation may help you to understand why this has happened and to plan for the future for both baby and family. This information might be helpful to families in different ways or at different times. Some people may find this information overwhelming, while others may find it empowering. The reason behind pursuing (or declining) genetic testing is unique for everyone.

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Most children with CHD do not have learning challenges. It is difficult to predict when a cardiac diagnosis will impact the learning and development of a child. It varies significantly from patient to patient and is influenced by each child’s specific diagnosis, any other diagnoses they may have, and how well they recover following medical intervention. In order to monitor learning and development as a child grows, and to connect families with resources as early as possible, you will be followed regularly by your Pediatric Cardiologist and Pediatrician. We also work closely with the Complex Pediatric Therapies Follow-up Program to ensure young children have access to developmental and learning supports. The Complex Pediatric Therapies Follow-up Program (CPTFP) The CPTFP provides a variety of assessments for young children after lifesaving, complex surgeries, and after heart-lung life support. Service through the CPTFP helps by: • Assessing a child’s abilities • Supporting young children in reaching early developmental milestones • Encouraging early intervention and education programs

• Ensuring the skills needed for ongoing learning and community integration are being developed • Assisting older children with school placement and learning supports as needed

Assessments are offered in developmental and neonatal follow-up clinics. They are done six months after treatment or surgery, between 18 to 24 months of age, and at four to five years of age. Assessments are done by qualified professionals within multidisciplinary clinics. The CPTFP will check motor, language and learning skills. They will take growth measurements and a health history. Physical and neurological examinations are also done. The CPTFP Registry The CPTFP works in collaboration with many specialized medical disciplines to try and find better ways of predicting how well a child will do after diagnosis. They do this by registering every child across Western Canada who is serviced by their follow-up program. This registry will help to achieve the best health and development outcomes possible for children in the future.

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WE WILL BUILD A TEAM AROUND YOU

Will CHD Impact My Child’s Learning and Development?


The Decision Tree

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The decision about what can be done for your baby depends on the type of heart defect your baby has. After making the diagnosis and receiving the results of any additional tests, your specialist medical team will explain the treatment options available to you. When the diagnosis of structural heart disease is severe, and there is no opportunity for a cure, three treatment paths may be discussed: • Medical and surgical intervention after birth • Termination of the pregnancy • Adoption after birth • Comfort care What can we do to treat our baby? Choosing Medical and Surgical Intervention Small holes in the heart do not require any intervention before or after birth and many close on their own within the first months to years of life. This is also true for mild valve problems. Larger holes may require medications and a common operation to fix the problem early in life. Complex heart defects usually require one or more operations to fix the heart or to make the circulation closer to normal. These operations may take place within the first few days, months, and years of life. The Fetal Cardiologist will discuss all the details of each option with you. If a surgery fails to improve the problem, or a baby does not recover well from the surgery, a heart transplant may be considered. Heart transplantation is also an option for babies and children whose heart defects are so severe that there is no medical or surgical procedure to improve the condition. What are my pregnancy options? Choosing not to continue the pregnancy, or choosing to continue the pregnancy and not parent the child (adoption) When the diagnosis of a heart defect is made, the pregnant woman usually has the option to continue or not continue the pregnancy depending on how far along she is in the pregnancy. For some parents, the knowledge that even after repeated surgery their child’s heart and lifestyle will never be typical means

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THE DECISION TREE

Will My Baby Survive? What Are My Options?


choosing to end the pregnancy. Others may consider adoption if they feel they are not able to give the extra care needed for a child with medical problems. These choices are both very personal. There is no right or wrong decision, but only what is right to each individual. We will never tell you what to do. We will simply give you the information that you need to make the best decision for you. We will support whatever decision you make. If you are thinking about not continuing with the pregnancy or placing your baby for adoption, please speak to one of your doctors about this. What if my baby’s heart is too sick? Choosing Comfort Care For some families, choosing to let nature take its course and allowing the baby to pass away in comfort is the best decision for them. Some parents feel they cannot contemplate ending a pregnancy, but do not feel that they want their baby to go down the surgical route of treatment. In these cases, a family can choose to offer their baby comfort care to ensure quality of life and minimal pain without correcting the underlying heart problem. The focus of comfort care is living comfortably, even if only for a short time. The Stollery Children’s Hospital has a team of experts called ASSIST (Aid for Symptoms and Serious Illness Support Team). The ASSIST team can discuss this option with you. Talking to the ASSIST team does not mean that you have to choose comfort care, but knowing more about comfort care can sometimes help a person to make a decision.

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THE DECISION TREE Fetal Cardiology Resource and Education 25


Next Steps for Continuing Pregnancies

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As the expected time of your baby’s birth comes closer, you are preparing for all the normal changes related to having a baby as well as the reality of your baby’s heart condition. After you have made decisions about how to move forward, you will wonder about how this will impact your pregnancy and birth plan. Pregnancy and Birth Questions How can my baby continue to grow and thrive with a heart problem? During pregnancy the placenta does the work that the heart and lungs may have difficulty doing after birth due to your baby’s heart issue. This is why most babies continue to grow and develop normally during pregnancy. Is a baby with a heart problem more likely to be stillborn? Mostly, babies with heart problems are not more likely to be stillborn than babies without a heart problem. If you have questions or concerns about this issue, please discuss this with your MFM Specialist and/or Fetal Cardiologist. If your doctors are worried that this is a risk, they will share this with you and make plans for the baby to be closely monitored. Can babies with heart problems be delivered vaginally? Most babies with heart conditions tolerate a vaginal delivery very well. In fact, there are benefits to both mom and baby in having a vaginal delivery. However, in some cases a baby may not be expected to tolerate labour well or might be expected to need a surgical procedure shortly after delivery. In these cases, a caesarean section is typically planned. Will I need an early induction of labour? Having a baby with a heart condition doesn’t usually require an early delivery. If possible, we prefer babies with CHD to be born as close to their due date as possible. Other obstetrical concerns may lead to early induction of labour. If there is any reason to consider early delivery, induction of labour will be discussed with you and your Fetal Cardiologist by your MFM Specialist. How will decisions be made? Plans for the care of you and your baby are made with your entire team during a multi-disciplinary meeting (MDM). Your Fetal Cardiologist, your MFM Specialist, a Neonatologist, your Obstetrician, and other healthcare professionals will all be involved in the discussion. You will be an integral part of this meeting. Your opinions and preferences are important and will be taken into account as we build your care-plan together.

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NEXT STEPS FOR CONTINUING PREGNANCIES

How Will This Affect My Delivery Plan?


My Hospital Admission When your baby receives a CHD diagnosis, you may be required to deliver at the Lois Hole Hospital for Women (LHHW), located at the Royal Alexandra Hospital (RAH) in Edmonton. The LHHW is the high-risk obstetrical hospital for Northern Alberta. When a baby is expected to require intensive care monitoring or a surgical procedure shortly after birth, pregnant women come to the LHHW to deliver. The LHHW delivers babies for women from all over Alberta, the Territories and the other Western Provinces. Most families who are expected to deliver at the LHHW are asked to re-locate to Edmonton around 37 weeks gestation. Accommodations can be arranged during your pregnancy at Ronald McDonald House or Larga House through your Social Worker. Some people have family members or friends in Edmonton and might consider staying with them for a few weeks. What if I need help sooner? Please proceed directly to the LHHW in the Robbins Pavilion at the RAH for assessment if you experience any of the following symptoms. If you have not yet relocated to Edmonton, please proceed to your nearest local hospital. • You feel you are in labour • You have bright red bleeding • You feel you are in an emergency situation

• You feel the birth of your baby is about to happen • You feel like your ‘water’ has broken or you are leaking fluid

• You feel like the baby is not moving as much LHHW, RAH Labour & Delivery (4 East) (780) 735-4848 LHHW, RAH Assessment Room (4 South) (780) 735-4783 How can I prepare for my hospital stay? To help you prepare prior to your stay, a PDF prenatal brochure has been created. You can find it online at http://www.albertahealthservices.ca/assets/ programs/ps-1046138-prenatal-brochure-lhhw.pdf Your healthcare team will also give you more information about how to pre-register for delivery and what to do if you go into spontaneous labour after hours. Prenatal classes for the LHHW can be arranged by calling 780-735-4204.

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• The Alberta online program at HealthyParentsHealthyChildren.ca • The Healthy Parents, Healthy Children Program also offers two books: “Pregnancy and Birth”

and “The Early Years”. These are available at most Doctor’s offices or Public Health Centres. • Or visit https://myhealth.alberta.ca

What should I bring? For labour and delivery: • Prenatal records and copies of all fetal echo reports • Money for parking • Washable robe and slippers

toothpaste, toothbrush, mouthwash • Labour coaching supplies • Magazines, books, cards, music via battery operated device

• Toiletries such as a shower cap, For maternal/child care unit: • Supporting bra, breast pads, underwear • Sanitary or incontinence pads

• Toiletries such as toothpaste, toothbrush, shampoo, comb, hairbrush, deodorant • Comfortable clothes for when you are discharged

If you plan to apply for financial support while your child is in hospital, bring your previous year’s tax assessment so that the Social Worker can assist you with the applications. Who will be present at my delivery? There will be several staff members present at your delivery: a team for you and a team for your baby. Mom’s team for a vaginal delivery consists of your partner/support person, your Edmonton Obstetrician, a labour and delivery Nurse Practitioner, and the labour and delivery Nurses. There may also be medical trainees. If having a caesarean section, the team will additionally include members of the operating room (OR) team: an Anaesthesiologist, a scrub Nurse, and a circulating Nurse. In both cases, staff from the neonatal intensive care unit (NICU) will attend the delivery to take care of your baby after birth. The NICU team may consist of a transport Nurse, one or two resuscitation Nurses, and may possibly include a Neonatal Nurse Practitioner or Neonatal Fellow. Fetal Cardiology Resource and Education 29

NEXT STEPS FOR CONTINUING PREGNANCIES

For general prenatal and birth information, you can consult the following resources:


Where do I go when it’s time to deliver? When it is time to deliver, you will come to the Robbins Pavilion at the Lois Hole Hospital for Women located on the Royal Alexandra Hospital Campus. Please bring your prenatal records and copies of all fetal echo reports. Pre-planned caesarean delivery For pre-planned caesarean delivery at the LHHW/RAH, you will report to Patient Registration on the Ground Floor. You will be admitted to 2 East or 3 East at least 2 hours prior to the scheduled time of surgery. Spontaneous labour If the plan is to wait for spontaneous labour, your Doctor will help you to understand what to watch for to know it is time to come to hospital. When you go into spontaneous labour, come to the Assessment Unit (4 South) to be examined. Please alert the triage Nurse in the Assessment Unit that your baby has a cardiac condition. You will be transferred to the Labour and Delivery Unit (4 East) once labour has been confirmed. Induction of labour If your Doctor has booked you for an induction of labour, a Nurse will phone you with a booking date and time. You will come to the Assessment Unit (4 South) where the induction process will begin. Once you are in active labour, you will be transferred to Labour and Delivery (4 East). Where will I go to recover after delivery? If you have an uncomplicated vaginal delivery, you will stay for about an hour on the Labour and Delivery Unit and then you will be transferred to the Postpartum Unit on 2 or 3 East. If you have a caesarean section, your baby will be delivered in an Operating Room (OR) and then you will be moved to the Recovery Room for about an hour before going to postpartum.

My Baby’s Hospital Admission The LHHW at the RAH works very closely with two Stollery Neonatal Intensive Care Units (NICUs) to ensure your baby gets the very best care after they are born. Both NICUs are highly specialized units with advanced medical technology to provide comprehensive 24 hour care for newborn infants requiring intervention or close monitoring immediately after birth.

30 Stollery Congenital Heart Program


A 69 bed unit that supports the LHHW high-risk obstetrical unit at the Royal Alexandra Hospital (RAH). It is located on the north side of the river and specializes in the care of critically ill or premature babies. The Stollery David Schiff (DS) NICU An 18 bed unit located at the University of Alberta Hospital (UAH)/ Mazankowski Alberta Heart Institute (MAZ). It is on the south side of the river. This site specializes in neonatal critical care for babies requiring heart surgery and/or other specialized pediatric services soon after birth. Welcome to the Stollery NICU Video https://www.youtube.com/watch?v=i2R4hHo10SM&feature=youtu.be How do they decide where my baby will go? Your Fetal Cardiologist will discuss with you the severity of your baby’s CHD. Sometimes, babies are well enough to stay with you on the Postpartum Unit at the LHHW/RAH. If a baby does not require surgery early in life (or at all), your baby may be cared for at the Stollery RAH NICU. They will be followed by the Pediatric Cardiologists there. Other babies require surgery in the first few days of life. In these cases, the baby will be transferred to the Stollery DS NICU, which is the cardiosurgical site for newborns. Our two NICUs work closely together. You might have experience with one or both of our NICUs. You may even recognize some of the same physicians, nurses, and medical staff who work at both sites. When will they take my baby? If it is decided that your baby will require care at the DS NICU, the timing of transport from the RAH will depend on your baby. Some babies are transferred shortly after birth and others are transferred at various points throughout their RAH NICU stay. In rare cases, a baby might require surgery immediately after birth. If this is the case, the baby may be delivered by caesarean section at the UAH/MAZ so that they can go straight into heart surgery. The caesarean is performed by an Obstetrician from the LHHW. The NICU team from the DS NICU will be there for baby along with a Registered Nurse from the LHHW for mom. Even if you have a caesarean section at the MAZ, you will be transferred back to the LHHW by ambulance for postpartum recovery.

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The Stollery RAH NICU


Will I get to see him or her? We try and keep mom and baby together as long as possible. If transport to another hospital is necessary, the healthcare team does their best to allow you to see your baby before being transported. There are sometimes situations where this may not be possible. If a baby is transferred from the RAH to the DS NICU immediately after birth, we encourage the partner/support person to take pictures to show you. How does my baby get there? Your baby will be transported by our NICU transport team. This consists of a transport Nurse and a Respiratory Therapist. We have a special transport isolette for babies (also called an incubator). The transport isolette is a special medical cot that keeps your baby warm and has safety straps to secure your baby during transport. The isolette has a ventilator so that your baby’s breathing can be supported if needed, and it also has spots for intravenous (IV) fluids and medication pumps. Your baby and their team are transported together by ambulance to the DS NICU. Who will go with them? More often than not, one parent is allowed to accompany their child in the ambulance with the transport team. If a parent is permitted to accompany their baby, they need to sit in the front passenger seat of the ambulance. There are some circumstances where a parent will not be allowed to travel in the ambulance with your baby. In this case your partner/support person can follow your baby to the Stollery DS NICU by car or taxi. When the transport team prepares your baby for transport, the team will discuss with you whether or not someone can travel with them in the ambulance. How will I get updates if my baby is at a different hospital? The transport team will provide you with information about the hospital and unit that your baby will be transferred to, as well as the contact numbers for the unit. You can get updates on your baby’s condition from your partner or by calling the Stollery DS NICU at 780-407-6297 and asking to speak with your baby’s bedside Nurse. You may call to get updates about your baby at any time day or night. In order to protect patient confidentiality, you will be asked for your baby’s hospital ID number when you call for an update. This is located on your hospital ID band. We ask that you do not share this number with anyone. We prefer to provide information directly to the baby’s parents/guardians only. We realize that extended family will also be eager to hear how baby is doing.

32 Stollery Congenital Heart Program


Can I still breastfeed? A mother’s milk is rich in nourishment and has many benefits for the health of babies. Many babies who need special care in a NICU are not able to breastfeed or take a bottle immediately after birth. Your baby’s Doctor will decide the right timing and the best way for your baby to take your milk. Sometimes babies can take your milk by droplet or tube feed until they are ready to take it by bottle or breastfeed. For this reason, it is very important to prepare your milk supply by pumping or expressing your milk soon after delivery. Ask your postpartum Nurse how to hand express or how to use the electric pump. Keep all drops of milk that you get, even if only a few. Those precious drops are filled with important nutrition for your baby and can be saved for later use. Once you have expressed milk, put one of your baby’s name labels on it, mark down the date and time that the milk was pumped, and store it in the refrigerator. Some units have a special fridge dedicated just for breastmilk. Have a family member bring this milk to the hospital where your baby is staying.

My Discharge from Hospital When will I be discharged? If you have delivered vaginally, you may be discharged the same day provided your health condition is stable. If you deliver by caesarean section, you will likely stay between 48 and 72 hours. If you are stable, you may ask your Obstetrician for a pass (for a couple of hours or even a day) to go see your baby at the DS NICU. How will I take care of my postpartum needs while at my baby’s bedside in the NICU? Before you are eligible for discharge, you need to be able to change your own pads and monitor your own flow. Before you leave, you should make arrangements to bring sanitary napkins/pads, a peri-bottle (one will be given to you while you are still in hospital), breast pads, and any other items you feel you may need (such as pain medication). These items are not easily accessible in a NICU setting, and it is important to bring them with you when you leave postpartum at the RAH.

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We ask that they speak with you or your support person/partner directly. Medical information will not be given to friends or family except at the explicit request of parents/legal guardians.


Healthy Beginnings Healthy Beginnings is a provincial program providing nursing care and support to moms after having a baby. Regardless of which province you have come from, they will contact you after your discharge from hospital to arrange an initial visit. Simply delivering your baby in Alberta qualifies you for the program. Healthy Beginnings will come visit you wherever you prefer. They will come to your house even if your baby isn’t home from hospital yet. If you are not from Edmonton, they can complete your assessment at your baby’s bedside in hospital, at the Ronald McDonald house, or even at your hotel. If you have had a caesarean section and have staples or sutures, Healthy Beginnings will make arrangements with you to have them removed. It is very important that the Nurses on the Postpartum Unit have a local phone number where you can be reached so that the Healthy Beginnings Nurses can connect with you while your baby is in hospital. If you have any questions about your own recovery after having a baby, you can call the Healthy Beginnings Hotline for help at 780-413-7990. You can call them anytime in the first two months after your baby is born. Healthy Beginnings will be a key link in getting the right postpartum care for you. When to Call for Help You should call for help if: • You pass a clot bigger than the size of a loonie

• A fever (>38 degrees Celsius) with chills

• You have increased bleeding (soaking more than one pad in an hour)

• Unusual pain in your abdomen

• If there is a foul odor to your vaginal flow (lochia)

• A headache that does not improve with medication (which may be accompanied by blurry vision, dizziness, or pain in the upper right side of your abdomen)

• If you develop new symptoms: If you are unsure whether or not you require help, call the Healthy Beginnings Hotline. They will help you to decide what type of help is required and the best way to access service. Postpartum Depression Baby blues or postpartum blues are normal after delivery and can last for about two weeks. Symptoms include feeling sad, anxious, or crying/being angry for no apparent reason. If these symptoms persist for more than two or three weeks, or if they begin to worsen, it could be a sign of postpartum depression. 34 Stollery Congenital Heart Program


Joining My Baby in the NICU How to Get There The Stollery RAH NICU is located on the 5th floor of the Diagnostic Treatment Centre (DTC) at the Royal Alexandra Hospital. Please have your postpartum Nurse take you there or provide directions to you. You will find your baby’s pod and bed space by inquiring at the reception desk of the NICU. The Stollery DS NICU is located on the 3rd floor of the Walter C. Mackenzie Health Sciences Centre at the University of Alberta Hospital. Parking is found at the East Public Parkade on 83 Avenue between 112 Street and 114 Street. This parkade closes at 9:00 pm after which access to the hospital is gained through Security Services at the Emergency Department Entrance. How will I find my baby? When entering the NICU, there is a welcome desk. The staff at the desk will be able to direct you to your baby’s bedside. What do I need to know about spending time on the unit? Handwashing is important. When entering the NICU all family and guests must wash their hands at the sink. Premature and sick babies are more at risk for infections because their immune systems are not fully developed or are compromised by illness. Frequent and thorough handwashing is the best way to prevent infections in babies. Introducing your child to other family members and close friends is important. In order to enter the unit, these visitors must be accompanied by one of the baby’s parents/guardians, or have their name added to a visitor list at the welcome desk. In order to ensure all families in the NICU have enough space to visit their loved one, three visitors per baby is often all that can be accommodated at the bedside at one time. Given the fragile nature of the patients in the NICU, we ask that siblings or visitors showing any sign of infectious illness do not enter the unit until they are well.

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NEXT STEPS FOR CONTINUING PREGNANCIES

Postpartum depression may involve frequent mood changes, feelings of inadequacy or apathy, or feeling like you want to harm yourself or your child. It is very important that you contact your healthcare provider or Healthy Beginnings to notify them of your symptoms. Help is available. Social Workers are on site at both NICUs and can connect you with the right type of service to help.


Parents may call the unit at any time to speak with their baby’s Nurse or other medical staff. To ensure that confidential information is given only to parents, please have your baby’s hospital ID number ready when you call. Medical information will not be given to friends or family except at the explicit request of parents/legal guardians. We appreciate that cellphones and other mobile devices are important for families to stay connected to others outside of the NICU. For the comfort of all the babies in the NICU, please turn your cell phone to silent. Bluetooth and data should not be enabled when in close proximity to medical equipment, but Wi-Fi is okay.   What will my baby look like when I get there? The NICU can often be overwhelming, especially on the first visit. The unit can sometimes be loud with many different alarms ringing. Your baby’s Nurse will tell you what each sound means. • Your baby may have a breathing tube in their nose or their mouth, or an oxygen mask over their face, to help support their breathing. • All babies have stickers on their chest called leads. These help us to monitor a baby’s heart rate and rhythm, and measures how fast they are breathing. • An oximetry probe is wrapped around their right hand or foot. This uses a special red light to measure the oxygen saturations.

(IV) lines used to give fluid, nutrition, or medication. These may be placed in a vein on the hands, the feet, through the belly button, or sometimes in a vein on their head. • Some babies will have a soft plastic tube called a foley catheter to drain urine from their bladder. • Some babies will have a soft flexible tube placed through their nose or mouth into their stomach to deliver nourishment or to remove air or fluid from the stomach.

• Babies will often have intravenous Once you are at the bedside, your Nurse will describe these to you and how they are used to monitor or care for your baby. Your baby’s Nurse and their Doctor will help to answer all of your questions. How long will we be there? It is difficult to predict how long your baby will be in the NICU. Length of stay varies from a few days to a few months. It depends on why your baby is in the NICU. Your baby’s care team will make sure they keep you updated on how your baby is doing and what the plan is for their medical care.

36 Stollery Congenital Heart Program


Family presence is crucial for a baby’s wellbeing and development. Parents and siblings are welcome 24 hours a day. There are chairs at the bedside, however there are no beds. There are several options for parents to stay close by while their baby is in hospital. The best way to learn more about accommodation is to speak with your Social Worker. There are a limited number of family rooms attached to the unit and these are shared amongst several intensive care units at the hospital. Use of these rooms is prioritized according to the needs of families and are generally reserved for those who arrive late at night or for those with critically ill babies.

Follow-up for Me and My Baby After any major hospitalization, patients need to see their Doctor to follow-up and make sure everything is progressing as it should. In your case, both you and your baby have had major medical events involving hospitalization. Follow-up for You After you are discharged from postpartum care at the RAH, you will be offered a visit by Healthy Beginnings (even if your baby is still admitted to hospital). They will call you to offer this visit. Make sure your postpartum Nurses at the RAH have a local contact number for you so that Healthy Beginnings can reach you and coordinate your postpartum care. All women who have had a baby should be seen by a Doctor at two weeks and six weeks postpartum, even if temporarily relocated to Edmonton. Speak with your Healthy Beginnings Nurse or the Social Worker on your baby’s unit to arrange for a referral. Moms from out of town can be referred to the Family Medicine Clinic at the Kaye Edmonton Clinic (across the street from the University of Alberta Hospital) for postpartum follow-up. If your baby is discharged from hospital and you return home prior to (or between) the two and six week marks, you can arrange for follow-up with your Obstetrician in your hometown unless otherwise specified by your Edmonton care team. Your baby needs you to take care of yourself. Do not neglect your own physical and mental health. Prioritize your own recovery.

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Can I sleep at my baby’s bedside?


Follow-up for Your Baby All the Fetal Cardiologists who work with you throughout your pregnancy are also Pediatric Cardiologists at the Stollery Children’s Hospital. For this reason, it is likely that they will continue to be involved in parts of your child’s future care. However, your Fetal Cardiologist will not necessarily be your baby’s primary Cardiologist (responsible for your child’s long term cardiac care). The Cardiologist on-call at the time your baby is delivered will be the one assigned to your baby as their primary Cardiologist. Your Fetal Cardiologist will ensure that any important information from your baby’s prenatal care is passed on to the primary Cardiologist to ensure a smooth transition of care. In some cases, your Fetal Cardiologist is the Pediatric Cardiologist on-call the day your baby is delivered. In these cases, the Fetal Cardiologist will also be your baby’s primary Cardiologist. We work closely with all of the Pediatric Cardiologists in Western Canada. If your hometown is closer to a different pediatric cardiology center in Western Canada, your baby’s records will be transferred to the Pediatric Cardiologist closest to you for your child’s ongoing cardiac care. A Discharge Coordinator will work with you prior to your baby’s discharge from hospital. They will make sure your baby’s follow-up appointment is booked and clearly communicated to you before you leave. Useful contact numbers for the Cardiology Outpatient Clinics in Edmonton and Calgary Edmonton Stollery Children’s Hospital Pediatric Cardiology Outpatient Clinic 4C2 8440-112 Street, Edmonton, AB Appointment Bookings 780-407-3952 Calgary Alberta Children’s Hospital Pediatric Cardiology Clinic Level 3, Cardiology Clinic 28 Oki Drive NW, Calgary, AB 403-955-7858 (Reception) 403-955-7316 (Nursing Line)

38 Stollery Congenital Heart Program


NEXT STEPS FOR CONTINUING PREGNANCIES Fetal Cardiology Resource and Education 39


Looking and Planning Ahead

40 Stollery Congenital Heart Program


For many, the journey of prenatal diagnosis and CHD is like a roller coaster. There will be ups and downs, triumphs and setbacks. And you, of course, are along for the ride. A great resource that may help you navigate this is available online: Knowing But Not Knowing. https://www.childrensheartnetwork.org/wp-content/uploads/2019/02/ Knowing-But-Not-Knowing.pdf We encourage you to build a support team and create a mental health careplan in advance. The following tips might help. Addressing Emotions Give Yourself Permission to Cry or to Feel Overwhelmed You may be concerned that if you let your feelings flow, you’ll never be able to pull yourself back together. You will. Allow yourself to feel the release of emotion. Tears can be therapeutic. Keep a Journal Expressing your feelings on paper can help. A journal may also strengthen your hope and patience by reminding you of how far you and your baby have come. Accept the Support of Others Let others know exactly what is most helpful (or unhelpful) to you. Be specific. People usually mean well, but don’t always know how to best support you. Consider making a calendar to show when meals or childcare are needed, and to indicate when you are or aren’t open to visitors. Use chore lists that people could choose from. Celebrate the Successes When you or your baby make progress, let yourself feel the joy! Peer Support Sometimes, connecting with others who have walked a similar path can help. Options include: • Children’s Heart Society • The “Parents of Stollery Children’s Hospital” Facebook page (unofficial)

• One-on-one or group peer support though the Stollery Patient and Family Centered Care Council or the Cardiac Family Advisory Care Team

Refer to the resource section of this booklet to learn more about how to connect with the above peer support opportunities. Fetal Cardiology Resource and Education 41

LOOKING AND PLANNING AHEAD

How Can I Get the Support I Need?


Connect with Staff Who Help You to Feel Comfortable • These staff members are often willing to listen supportively

• They can direct you to resources specific to your needs and concerns

• They can help to alleviate some concerns or pressing questions Couple/Caregiver Interaction Know that you and your partner may react and process differently. Share your experiences and listen with empathy to convey support. Tell your partner what you need or would find most helpful. Ask for support from your healthcare team if you are having struggles with your relationship. They can help to guide you in accessing services or finding local community supports. Finding Balance • Establish a routine. Try to balance work, home, and medical care.

• Find a creative outlet. Be kind to yourself.

• Make time for yourself, your partner, your children and other significant others. Give them dedicated pieces of time, and protect it – yourself included!

• Explore your spiritual side. Some find it helpful to reflect and lean on a personal spiritual perspective. Some people find comfort in speaking with a spiritual leader.

• Take care of yourself. Take time for you each day. Give yourself a treat. RAH Reproductive Mental Health Program The Royal Alexandra Hospital has a reproductive mental health program offering limited counseling services covered by Alberta Health Services to a 6 session maximum. This program helps provide coping strategies and guidance to address anxiety, depression, stress, grief, and bereavement. Physician referral is preferred. Self-referrals are accepted. Call for more information (780-735-6785) or speak with your Fetal Cardiologist to ask for a referral. Inpatient/Outpatient Social Workers As part of the healthcare team, Social Workers provide assistance with building a plan to address family needs and coping. Supports can include: • Assistance with relocation to Edmonton • Funding supports and financial counseling • Coordination of time off work 42 Stollery Congenital Heart Program

• Referrals to community programs • Assistance with issues related to grief and loss resulting in changes to daily living


Social Workers may also be able to help address other concerns you might have like: • I don’t have a dependable partner

• I have issues with addiction

• I’m not done with school

• I live outside of town

• I have a mental health condition

• I lost my job

• I’m homeless If you need help right away, or you are unsure of which community/ counseling program would best meet your family’s needs, you can speak with a local Social Worker to best assess your situation. See the resource section for more information on how to access social work support local to you.

Information Overload As the expected time of your baby’s birth comes closer, you are preparing for all of the normal changes related to having a baby as well as the reality of your baby’s heart condition. You may feel overwhelmed with information. It is okay to let your healthcare team know that you need time to absorb all of the information you have been given. As time goes on, you will learn and understand more about the impact of CHD on your baby and your family. Some families have felt as if waiting for their baby’s arrival was “like an eternity”, while others awaited birth with anticipation of joy, relief, maybe some worry, and perhaps the expectation of some new challenges. Seeking information is only one way to cope with the uncertainty you are experiencing. Other ways of coping include acknowledging your expectations and feelings. We are here to support you and will help you find your way on this journey.

Fetal Cardiology Resource and Education 43

LOOKING AND PLANNING AHEAD

You will meet one (or more) Social Worker(s) during your journey. Generally, a Social Worker will join your care team around the time of the multidisciplinary meeting (MDM) at about 32+ weeks gestation. They will give you information about the NICU and different resources that might be helpful to you. They will also offer you a tour of the NICU.


Resources

44 Stollery Congenital Heart Program


RESOURCES

Contact Numbers FETAL ECHO CLINIC Bookings or Cancellations

780-735-6649

Fetal Cardiology

780-735-6649

MATERNAL FETAL MEDICINE (MFM) CLINIC Bookings or Cancellations

780-735-4813

MFM Nurse

780-735-6436

REPRODUCTIVE MENTAL HEALTH (RMH) Central Booking

780-735-6642

RMH Nurse

780-735-6785

FOR URGENT ASSISTANCE Community Urgent Services and Stabilization Team

780-342-7777

Fetal Cardiology Resource and Education 45


Maps/Buildings/Parking Royal Alexandra Hospital Campus: Parking and entrance off 111 Avenue

P Renal Dialysis

Community Services Centre

Materials Management Centre

Robbins Pavilion • Lois Hole Hospital for Women • C.K. Hui Heart Centre (2011)

Women’s Centre

North East Parkade

P Diagnostic Treatment Centre (DTC)

P Children’s Centre

P

Emergency

Hys Centre

Royal Alexandra Hospital Active Treatment Centre (ATC)

Ortho Surgery Centre

Anderson Hall

South East Parkade

Fetal Echo Cardiology Clinic

P

Lois Hole Hospital for Women, Robbins Pavilion 5th floor, Unit 5 West 780-735-6649 Maternal Fetal Medicine Clinic Lois Hole Hospital for Women (LHHW) Clinic A, Ground Level (basement) By 104 Street and 111 Avenue 780-735-4813

091103_pl_02

46 Stollery Congenital Heart Program


RESOURCES

Royal Alexandra Hospital Parking Office Location: Room 100, Material Management Centre Business Hours: 8:00 a.m. – 4:00 p.m. Monday to Friday (closed on holidays) Phone Number: (780) 735-5630 or (780) 735-5014 Email: ParkingEdmonton@ahs.ca

Public Parking Rates Rates apply 24 hours per day, and are in effect for all public parkers, including those with provincially issued placards for persons with disabilities. Public parking is GST exempt. Pay by Plate machines accept Canadian coins or credit card (Visa, Mastercard, American Express). Maximum 28 Canadian coins per transaction, no pennies. Machines provide no change.    Pay on Foot machines accept Canadian coins and bills, or credit card (Visa, Mastercard, American Express). These machines will provide change. Parking Office accepts payment by cash, credit card, debit or cheque. Short Term Public Parking Rates: Surface parking lots:

$2.25 per half hour or portion thereof Daily passes $14.25 for 24 hours available from pay stations

Parkade:

$2.25 per half hour or portion thereof Daily passes $14.25 for 24 hours available from pay stations

Long Term Rates for Patients and Visitors: Weekly parking pass:

$40.00

Monthly parking pass:

$71.00

Weekly passes are available at the following locations:     • Parking office   • Southeast Parkade paystations (Pay on Foot machines) • Southeast Parkade booth attendant Monthly passes are only available in the parking office. Authorization form from clinic/patient care unit required for monthly passes.

Vehicle and Height Restrictions Height restrictions:

Southeast Parkade: 2.13 meters (7 feet)   Northeast Parkade: 1.98 meters (6 ft. 6 in.) Kingsway: 1.82 meters (6 feet)

Accessible Parking Locations Lower Kingsway:

Near Hospital Entrance

Northeast Parkade:

Levels 1 and 2 near elevator lobby

Southeast parkade:

Level 3 near pedway (No in and out privileges with the purchase of a daily pass)   

North Public Lot:

Closest to building entrances

Robbins Lot:

West side of building

Womens Lot:

Beneath pedway

Valid government issued parking placard for persons with disability required. Parking rates apply. Valid until March 31, 2018

www.albertahealthservices.ca/parking

Rates subject to change

Fetal Cardiology Resource and Education 47


Directions from the Royal Alexandra Hospital to the University of Alberta Hospital 1. Head South on 109 Street 2. Proceed across the High Level Bridge 3. Turn right onto 87 Avenue 4. Turn left onto 112 Street 5. You will see the University of Alberta Hospital/Mazankowski Heart Institute on the right hand side

6. For the East Public Parkade, turn right onto 83 Avenue and the entrance will be on the left 7. The pedway is located on the fourth floor of the parkade and will lead you to the second floor of the Mazankowski 8. Ask for directions to the NICU at the information booth

If arriving after hours, access to the hospital is gained through security located at the Stollery Emergency Room entrance.

 

University of Alberta Hospital, Stollery Children’s Hospital Mazankowski Alberta Heart Institute Public Parking

New parking equipment has been installed to make paying for parking more convenient.  Valid until March 31, 2018 www.albertahealthservices.ca/parking  

Rates subject to change

New equipment is conveniently located at the locations marked above in yellow.  Buy a permit by entering your license plate before paying by coin or credit card (no need to return to your vehicle to  display permit).   Weekly permits are not available from Pay by Plate equipment (please see next page for weekly permit purchases).   Pay by Plate permits are not valid in East Public Parkade or Public Underground Parking.   East Public Parkade and Public Underground Parking are pay on exit  48 Stollery Congenital Heart Program  Staying longer than expected? Before your time expires, add time to your permit without returning to your vehicle.  Just enter your plate number at any pay station and follow prompts. 


Location: Room 0H1.01, Walter Mackenzie Centre, University of Alberta Hospital Business Hours: 8:00 a.m. – 4:00 p.m. Monday to Friday (closed on holidays) Phone Number: (780) 407-8890 Email: ParkingEdmonton@ahs.ca

Public Parking Rates Rates apply 24 hours per day, and are in effect for all public parkers, including those with provincially issued placards for persons with disabilities. Public parking is GST exempt. Pay & Display machines accept Canadian coins or credit card (Visa, Mastercard, American Express). Maximum 28 Canadian coins per transaction, no pennies. Machines provide no change. Pay on Foot machines accept Canadian coins and bills, or credit card (Visa, Mastercard, American Express). These machines will provide change. Parking Meters will accept $0.25, $1.00 and $2.00 Canadian coins only Parking Office accepts payment by cash, credit card, debit or cheque. Short Term Public Parking Rates: East Public Parkade:

$2.25 per half hour or portion thereof $14.25 for 24 hours (no in and out privileges)

Public Underground Parking: $2.25 per half hour or portion thereof $21.75 for 24 hours (no in and out privileges) Emergency Lot:

$2.25 per half hour or portion thereof $30.25 for 24 hours

Parking Meters:

$2.25 per half hour or portion thereof

Long Term Rates for Patients and Visitors: Weekly parking pass: $40.00 Monthly parking pass: $71.00 Weekly and monthly passes are available at the parking office. Authorization form from clinic/patient care unit required. Contractor Monthly Pass:

$150 including GST

Vehicle and Height Restrictions Propane powered vehicles are not permitted in the parkade or underground parking areas. Height restrictions:

East Public Parkade: 2.0 meters (6 ft. 8 in.) Public Underground parking: 2.0 meters (6 ft. 8 in.)

Accessible Parking Locations East Public Parkade:

Disabled parking located on the 4th level of the parkade, near the pedestrian pedway.

Public Undergound Parking:

Disabled parking located near Level 0 hospital entrance.

114th Street Parking:

Limited Disabled parking located outside the Stollery and main entrance.

Valid government-issued parking placard for persons with disability required. Parking rates apply.

Valid until March 31, 2018

www.albertahealthservices.ca/parking

Rates subject to change

Fetal Cardiology Resource and Education 49

RESOURCES

University of Alberta, Stollery Children’s Hospital Parking Office


Resources Building Your Support Team and Your Support Plan In Advance Local community organizations such as clubs, churches, and community centers may offer financial support or other assistance. Health professionals in your community such as your Family Doctor, Public Health Nurse, Social Worker, or Family Counselors can also provide assistance or help to connect you with these resources. We encourage you to build your team and create your plan in advance. The following resources may help.

Fetal and Neonatal Cardiology Resources • Western Canadian Children’s Heart Network http:// westernchildrensheartnetwork.ca/ • Stollery Congenital Heart Program website www.ahs.ca/StolleryHeart • Heart and Soul: Your guide to Living with Congenital Heart Disease • Mayo Clinic Heart defects explained https://www.mayoclinic.org/ diseases-conditions/congenitalheart-defects-children/symptomscauses/syc-20350074

• The Children’s Hospital of Philadelphia - Online resources http://www.chop.edu/centersprograms/fetal-heart-program/ health-resources#.VnBs617CeDg • Boston Children’s Hospital Good resources especially for single ventricles http://www.childrenshospital. org/centers-and-services/ programs/f-_-n/fetal-cardiologyprogram/conditions-andtreatments • San Francisco Children’s Hospital https://www.ucsfbenioffchildrens. org/conditions/heart_care/

Peer Support Children’s Heart Society Edmonton Supports families of children with acquired and congenital heart disease. Offers educational support, parent to parent support, bimonthly newsletter, and social events. A nonprofit charitable organization that is operated by volunteers. Email: childrensheart@shaw.ca Website: http://www.childrensheart.ca/ Phone: 780-454-7665

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RESOURCES

Sibshops Workshops for siblings of children with special needs. Provides opportunities for brothers and sisters of children with special health, mental health and developmental needs to obtain peer support and education within a recreational context. Sibshops are designed for school aged children (7-13 years old). Phone: Debi Currie at 780-496-1499 Email: debi.currie@edmonton.ca The Patient and Family Centered Care Network (PFCC) The PFCC is made up of physicians, staff, families and patients who have experience at the Stollery Children’s Hospital. Families and patients are involved by: • Sharing their patient story at new staff orientation

• Encouraging other families through peer support opportunities

• Education of health professionals

• Serving on committees and special projects

• Providing input on policy and procedure development

Meeting with another family who has experienced a similar journey can be helpful for some families (peer support). Please speak to your fetal cardiology team to discuss this if you are interested. Cardiac Family Advisory Care Team (cFACT) The PFCC has established a Cardiac Family Advisory Care Team. Answers the growing commitment of the Stollery and the Congenital Heart Program to fully embrace patient and family centred care practices. Families and staff join forces in achievable initiatives. Learn more about getting involved by visiting the Family Room on Level Four or phone 780-407-7255.

Resources Outside of Edmonton British Columbia Children’s Heart Network Vancouver, BC Phone: 604-568-3005 (local) or 1-877-833-1773 (toll free outside Vancouver area) E-mail: chn@childrensheartnetwork.org Website: www.childrensheartnetwork.org BC Variety – The Children’s Charity If you are a resident of BC and your child travels to Edmonton for cardiac care, you may be eligible for the BC Variety Emergency Response grant. If you need immediate assistance arising from a medical emergency, BC Variety provides Fetal Cardiology Resource and Education 51


funding to access medical care, supplies, and related expenses such as out of town accommodation, transportation, and food. The Children’s Charity steps in where healthcare ends to provide direct help to children in BC with special needs. You can complete an emergency application; provide proof of income, income tax notice of assessment, and your family’s monthly costs to determine if you are eligible for a funding grant. Call 1-604-268-3884 for more information. Northern Friends of BC A non-profit society assisting Northern BC and East Kootenay families with children in extraordinary medical need. This charity supports children with medical emergencies, specialized equipment, out of town travel costs, meals, and accommodations. Contact the program to determine if you are eligible for funding. Friends of Children: 1-250-564-2217 Toll free: 1-866-564-2217 Alberta The Children’s Heart Society Phone: 780-454-7665 E-mail: childrensheart@shaw.ca Website: www.childrensheart.ca Heart Beats If you live in Southern Alberta and you are travelling to Edmonton for your child’s cardiac care, Heart Beats can help to offset travel costs by providing gas and grocery cards. Funds are limited. Calgary, AB E-mail: info@heartbeats.ca Website: www.heartbeats.ca Heart Beats Funding: 403-955-7316 Alberta Mental Health For referral to resources in your area call 1-877-303-2642 Family and Community Support Services (FCSS) For referral to services in your community, check out http://www.humanservices.alberta.ca/family-community/14876.html Alberta Children’s Hospital ACH Outpatient/Inpatient Social Worker: 1-403-955-2581 Saskatchewan Little Hearts Family Group Saskatoon, SK E-mail: info@sasklittlehearts.com Website: www.sasklittlehearts.com

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Phone Geneen Guinan 1-306-244-6400 ex.1 Regional Hospital Regina Inpatient transfers and community resources can be addressed by contacting the hospital Social Worker. Phone: 1-306-766-4589 Royal University Hospital, Saskatoon Health Region Pediatric Social Worker 1-306-655-2587 NICU Social Worker 1-306-655-2042 Manitoba Circle of Hearts Winnipeg, MB Phone: 204-787-2532 E-mail: circleofhearts@hotmail.com Website: www.circleofhearts.ca Variety Children’s Heart Center Funding Manitoba families who are followed by the cardiology program in Winnipeg are eligible to receive Variety Children’s Heart Center Funding for the cost of medical travel (flights, accommodation, and meals) to the Stollery Children’s Hospital for their child’s cardiac care. Speak with the cardiology program Social Worker prior to travel so that needs can be assessed in advance. Pediatric Cardiology Social Worker: 1-204-787-2484 Winnipeg Children’s Hospital Pediatric Cardiology Social Worker: 1-204-787-2484

Financial Supports Your Social Worker can help you decide which of these benefits you may qualify for. If you anticipate applying for funding support while your child is in hospital, bring your previous year’s income tax assessments with you. This will help when applying for various financial supports.

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RESOURCES

Kinsmen Telemiracle Funding Provides funding to Saskatchewan residents who travel to Edmonton for their child’s cardiac care. Parents are required to complete a Kinsmen Application, provide proof of income, family’s monthly expenses, income tax notice of assessment, and a letter confirming their child’s hospitalization. If you are eligible, Kinsmen may assist with the cost of accommodation, meals, parking, and mileage travel costs.


Employment Insurance (EI) - Maternity and Paternity Benefits Canadian employees are entitled to up to one year of unpaid, job protective leave in the event of the birth of a child. If you have accumulated 600 insurable hours of work in last 52 weeks, you may qualify for unemployment insurance (55% of your salary) during your maternity leave. Contact your nearest Employment Office to apply. Family Caregiver Benefits If you are a parent or family member who has to be away from work to provide care or support to a critically ill child, you could be eligible for Family Caregiver Benefits. You may be eligible if you have accumulated 600 insurable hours of work in 52 weeks and your weekly earnings have decreased by more than 40% because of a need to provide care to a critically ill child. You must complete an application online, provide a medical certificate (completed by physician or Cardiologist) verifying your child’s medical condition, and sign an Authorization to Release form in order to qualify for the program’s benefits. Employment Insurance - Compassionate Care Benefits Employment Insurance benefits are paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill and who has a significant risk of death. A maximum of 26 weeks for compassionate care benefits may be paid if you are eligible. You must have accumulated 600 insurable hours of work in the last 52 weeks and be able to demonstrate a 40% reduction in weekly earnings. You can share the 26 weeks of care benefits with other members of your family. Benefits are 55% of your average insurable earnings up to a maximum of $49,500. You must complete an online application. A medical certificate and an Authorization to Release form are required verifying your ill family member’s medical condition. You cannot work fulltime while receiving compassionate care benefits. Contact 1-800-206-7218 press 0 to speak with a representative. Family Support for Children with Disabilities (FSCD) Edmonton FSCD is a program that may offer services and supports to families of children (up to age 18) with disabilities. Services support “extraordinary” needs related to the child’s disability. In order to determine eligibility, your child must meet FSCD criteria stating a child’s disability limits their ability to function in normal daily living activities. (Disability is defined as a chronic, developmental, physical, sensory, mental or neurological condition or impairment). FSCD requires a completed application, medical letter from the child’s primary physician, and the child’s birth certificate. Consult the medical team to determine if your child’s medical condition would likely qualify for this program. Intake phone number: 780-427-4354

54 Stollery Congenital Heart Program


Disability Tax Credit A monthly benefit providing financial assistance for qualified families caring for children with severe and prolonged mental or physical impairments. Your child is eligible for the disability amount when a qualified practitioner (physician or Cardiologist) certifies income tax form T2201 stating your child has a severe and prolonged impairment in physical or mental functions and Canada Revenue Agency approves your child’s Diagnosis. Canada Child Benefit A non-taxable amount paid to help eligible families with the cost of raising children under 18 years old. Visit Website: www.cra-arc.gc.ca/benefits to apply for the program. Alberta Works Provides financial assistance for basic costs of living including food, shelter, or utilities when families have no other source of income. Parents must provide proof of income, bank statements, and mortgage information to determine that no other funds are available. Ask your Social Worker for assistance to apply for income support or to have your financial situation assessed. Food Bank Edmonton Food Bank is a central warehouse and referral center. The Food Bank provides food hampers to assist in short-term situations by referring you to a community food depot in your area. The Food Bank also assists families with food security such as collective kitchens or food buying cooperatives. To access a hamper, referral, or other food services please call the Client Services Line at 780-425-4190. Open Monday – Friday 8:30-4:00 pm. Website: www.edmontonsfoodbank.com/hungry Extended Health Benefits Adult Health Benefits Adult Health Benefits supports Albertans with low income to ensure they have access to prescription drugs, dental services, optical, emergency ambulance and medical supplies essential to health. Families must qualify by income. Income eligibility for a two parent, two child family is less than $36,634 based on last

Fetal Cardiology Resource and Education 55

RESOURCES

Employer Benefit Programs Speak to your employer regarding time off from work to attend your child’s surgery or hospitalization. Some employer benefits provide family leave days, paid time off, time off without pay, or paid vacation time. Speak with your employer and/or primary physician to clarify if you are eligible for short or long term leave benefits and establish the best supportive plan for you. The hospital Social Worker can provide you with a letter confirming your child’s hospital stay.


year’s income tax notice of assessment. A medical letter stating your child has ongoing prescription needs is required. Contact 780-427-6848 Website: https://www.alberta.ca/alberta-adult-health-benefit.aspx for an application and program information. Child Health Benefits Child Health Benefits supports Albertans with low income paying for their children’s basic healthcare bills such as prescriptions, dental, and optical. Program is income based according to last year’s income tax notice of assessment. Income eligibility for a two parent two child family is less than $36,634. Contact 780-427-6848 Website: https://www.alberta.ca/alberta-child-health-benefit.aspx for an application and program information. Alberta Blue Cross Individual and Family Non Group Coverage Blue Cross medical coverage is available for Alberta residents who are selfemployed or parents working without group benefits who require extended health coverage. We advise applying for Blue Cross Non Group Coverage as cardiac medications can be directly billed to your benefit program, leaving you to pay just the outstanding amount. Based on income, you may qualify for a subsidized rate. For a family with children, income eligibility is less than $39,250. Review plans at https://www.ab.bluecross.ca/individuals-families/index.php

Post Natal and Home Care Services This is a registered fee-for-service agency providing home support on a parttime or flexible basis so that parents may rest or leave to take a break. Their goal is to reduce parental stress and fatigue. Services provided may include: • Part-time or short term child care support for babies • Respite care of toddlers, preschoolers and special needs children

• Laundry services • Care for families with high-risk pregnancies • Part-time respite

Staff is available daytime, evenings, and overnight throughout Edmonton, St. Albert, Stony Plain, Spruce Grove, Devon, and Sherwood Park. Contact the program to determine your fee for service. Direct billing with FSCD is available. Website: www.postnatalcareservices.com Phone: 780-433-9601

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Access 24/7 Provides a single point of access to adult addiction and mental health community based programs. Access line or walk in available. Anderson Hall 10959-102 Street NW Edmonton, AB (780) 424-2424 211 Alberta 211 is a helpline and online database of Alberta’s community and social services. This can help you find programs and services in your community. Dial 211, anytime 24/7. Website: https://www.ab.211.ca/ The Family Centre Provides counseling to individuals, couples, and families. Offers single one hour sessions and provides referrals to additional supportive services if required. 9912 - 106 Street, Edmonton, AB Phone: 780-423-2831 Fees: sliding scale www.the-family-centre.com Community Counseling Centre #202, 10534 - 124 Street Edmonton, AB Phone: 780-482-3711 http://www.communitycounsellingcentre.ca/ Canadian Mental Health Association Edmonton Region Provides recovery-focused programs and services for people of all ages and their families. Phone: 780-482-0198 http://edmonton.cmha.ca/programs-services/ YWCA of Edmonton Counseling Service Offers groups for children ages 6-16 (divided by age), groups for adults who have lost a love one, as well individual counseling. Main floor, 10242 - 105 Street, Edmonton, AB Phone: 780-423-9922 ext. 222 www.ywcaofedmonton.org Fees: sliding scale

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RESOURCES

Counseling Services


City of Edmonton Family and Community Support Services Free short-term counseling to help with daily stressors, marital/parenting challenges, spousal abuse or violence in the family. Individual and group counseling is offered. Contact program to speak with intake worker for an over the phone screening and assessment. Phone: 780-496-4777 Website: www.edmonton.ca view Programs and Services. Employee Assistance Programs Some employer benefits offer counseling, short and long term leave, or disability benefits. An employment leave would require consultation with your employer and family physician to best assess your need.

Infant/Perinatal Loss Angel Whispers www.angelwhispers.ca/angelwhispers/ Sherwood Park Strathcona County Health 2 Brower Drive Phone: 780-449-1732 Fort Saskatchewan Families First Office 10302A - 99Ave Phone: 780-998-5595 H.E.A.R.T.S. Helping Empty Arms Recover through Sharing 44, 48 Brentwood Blvd Sherwood Park, AB 780-464-3217 heartsbabyloss@shaw.ca ParentCare Misericordia Hospital 16940 - 87Ave Edmonton, AB 780-989-5040 www.parent-care.ca  

58 Stollery Congenital Heart Program


The Edmonton Distress Line 24 hour support 780-482-4357 or call 211 Pediatric Palliative Care Program at the Stollery Children’s Hospital Carmen Victoor, B.Ed, M. Ed Counseling Psychology Grief Support Counsellor Phone: 780-407-7825 or 780-920-7238 Carmen.victoor@albertahealthservices.ca Edmonton Bereavement Centre Offers non-denominational counseling to individuals, couples and families. Offers structured bereaved parent groups throughout the year. Phone: 780-454-1231 www.jfse.org Fees: sliding scale Grieving Parents Society (of Edmonton) Offers a monthly self-help support group for bereaved parents. Edmonton, AB 780-451-5381 www.grievingparents.ca Pilgrims Hospice Offers an expressive art group for grieving children, teens and families. Phone: 780-413-9801 www.pilgrimshospice.ca Compassionate Friends of St. Albert Red Willow Community Church 15 Corriveau Ave, St Albert, AB 780-458-1362 www.tcfcanada.net Compassionate Friends of Strathcona County 44, 48 Brentwood Blvd Sherwood Park, AB 780-464-3217 strathconacounty@tcfcanada.net  

Fetal Cardiology Resource and Education 59

RESOURCES

Community Bereavement Supports


Spiritual and Cultural Supports Catholic Social Services Website: www.catholicsocialservices.ab.ca Intake Worker at 780-420-1970 • Individual and Family Program This program offers therapeutic counseling to individuals, couples and families and is provided by clinical Social Workers or Registered Psychologists. The program may be covered by employer extended health benefits. If no coverage is available, this program uses a sliding fee scale. Services offered are confidential. • Counseling Play Therapy Program A trained play therapist uses

therapeutic play to help children and families prevent or resolve psycho-social difficulties. The play therapist assesses the child’s play and uses it to help the child cope with difficult emotions. • Cross Cultural Counseling and Outreach Program This program provides specialized counseling support, and outreach services to immigrants and refugees.

Islamic Family and Social Services Association (IFSSA) IFSSA offers confidential spiritually and culturally sensitive counseling services to individuals and families seeking help. Fostering Healthy Families program provides direct support services to family members and individuals affected by family violence in the immigrant community. Counseling services are provided by Muslim provisional psychologist. Fees are $35.00 per session at the time of session. This fee is non-negotiable and subsidy will be granted for up to 6 sessions. Financial subsidies are available for clients with demonstrated need. Website: www.ifssa.ca/services Phone: 780-462-0772 Jewish Family Services Edmonton Healing Center for Grief and Loss Counseling provided for individual and group support. Fees charged on sliding scale from $0 to $150.00 per hour. Contact program to speak with intake worker to clarify fee rate. All denominations welcomed. Website: www.jfse.org Phone: 780-454-1194

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204 Anderson Hall 10959-102 Street NW, Edmonton, AB Royal Alexandra Hospital Phone: 780-735-4512

Parenting Support KARA Family Resource Center Kids are the Responsibility of All. KARA offers drop-in programs, registered programs, family support (collective kitchen, Health for Two, Coping with Toddler Behavior, Positive Parenting Program), Parenting information and resources. KARA provides parents the opportunity to learn and interact with their children (0-6 years of age). KARA offers courses and workshops. Some programs are for parents only and others are interactive programs for parents and preschoolers. Website: www.kara-frc.ca/Programs 6717 -132 Avenue Edmonton, AB Phone: 780-478-5396 Kids Kottage/Crisis Nursery Kids Kottage offers 24 hour emergency respite to families in crisis by admitting their infants and children up to 11 years of age for up to 72 hours, free of charge. Parents can call a crisis telephone line any time, day or night. Kids Kottage is for parents who need immediate support or respite when faced with a crisis in order to stop the threat of abuse or to minimize the stress that parents face. The children are kept safe at the Kottage while their parents are relieved of parenting responsibilities for a short time. The parent and family support worker work together to identify and set up a plan to solve or address issues related to the crisis. CRISIS LINE 780-944-2888 10107 – 134 Avenue Edmonton, Alberta. Website: www.kidskottage.org 

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RESOURCES

Indigenous Wellness Clinic The Indigenous Wellness Clinic advocates and partners to provide high quality and accessible wrap-around care in a culturally centered, trauma-informed, multidisciplinary practice setting.


Basic Glossary of Terms Word:

Definition:

Amniocentesis

A sample of the fluid around the baby is taken

Antenatal

Before delivery

Caesarean section

Birth of baby by a surgical procedure

Congenital heart defect (CHD)

Heart issue or problem that is present at birth

Chromosome

A structure holding together thousands of genes

CVS (chorionic villus sampling)

Sample of the baby’s placenta is taken

Diagnosis

Identification of the type of illness

DNA

Your body’s blueprint of how to grow and function

Echocardiogram

Ultrasound that creates “pictures” of the heart by sound waves

Fetal

Pertaining to the unborn baby or fetus

Gene

One specific instruction for your body

62 Stollery Congenital Heart Program


RESOURCES

Word:

Definition:

Microarray (array)

Tests for smaller chromosomal issues

Multi-disciplinary Meeting (MDM)

A planning meeting between you and your healthcare team to determine the best plan for the delivery of your baby

Multi-disciplinary team

A group of healthcare professionals who will guide you during your pregnancy, delivery, and postdelivery care of your baby with a heart problem

Neonatologist

A doctor who specializes in caring for newborns in hospital during the neonatal period

Non-invasive prenatal testing

A blood test for the mom can be used to screen for some differences with the baby’s chromosomes

Pediatric Cardiologist

A doctor with special training in caring for children with heart conditions

MFM Specialist

A doctor who specializes in caring for high-risk pregnancies

RAD (Rapid aneuploidy detection)

Test for major chromosome disorders (e.g. Down syndrome)

Fetal Cardiology Resource and Education 63


Hospital and Unit Abbreviations

Word:

Definition:

RAH NICU

Stollery Royal Alexandra Hospital Neonatal Intensive Care Unit

DS NICU

Stollery David Schiff Neonatal Intensive Care Unit

LHHW

Lois Hole Hospital for Women

MAZ or MAHI

Mazankowski Alberta Heart Institute

UAH

University of Alberta Hospital

RAH

Royal Alexandra Hospital

WCM

Walter C. Mackenzie Health Sciences Centre

64 Stollery Congenital Heart Program


Notes

Fetal Cardiology Resource and Education 65


Notes

66 Stollery Congenital Heart Program


Notes

This material is for information purposes only. It should not be used in place of medical advice, instruction, and/or treatment. If you have questions, speak with your Doctor or appropriate healthcare provider.

Fetal Cardiology Resource and Education 67


www.stollerykids.com

Profile for The Stollery Congenital Heart Program

Fetal Cardiology Resource and Education  

Information for families referred to the Stollery Congenital Heart Program when diagnosed before birth

Fetal Cardiology Resource and Education  

Information for families referred to the Stollery Congenital Heart Program when diagnosed before birth

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