Although having a baby with a heart defect can be scary, most babies born with congenital heart disease will do well as long as they have their medicines and treatments. Your baby will need extra care for his or her heart, as well as all of the other regular well-child care. It is okay to have the same hopes and dreams for your child’s future as you would for any other child. The following are appointments and cares your child will need: Pediatrician Your baby will need regular follow-up appointments to measure growth, development, and nutrition. You will want to find a local pediatrician for routine checkups. Usually, these appointments are every 2 months for well-baby checks and immunizations. Cardiologist Appointments Your baby will have a cardiology clinic appointment about every 2 weeks during the interstage period. The interstage period is the time from the first surgery until the second staged surgery at 4 to 6 months of age. During these visits, your baby will see the home monitoring team, a dietitian, and a cardiologist. Your baby will have an echo and ECG at most visits. Your baby will also have neurodevelopmental testing, which looks at how well the brain is growing. After the second stage surgery, cardiology appointments are every 1 to 3 months. Common Testing Between Staged Surgeries Heart ultrasound (echocardiogram): An ultrasound used to look closely at your baby’s heart and surrounding blood vessels. This will be done to monitor the baby’s heart in between surgeries. Heart catheterizations: A test to measure pressures in the heart, take pictures (angiography), and/or open any narrowings with a stent or balloon. CT scans or MRI scans: Procedure to look at heart function and blood flow. Home Monitoring Home monitoring occurs from the time when your baby goes home until they have their stage II surgery. This could mean that a nurse comes to your home one time a week to check your baby’s heart rate, breathing, oxygenation, and weight. It could also mean that you take home equipment to weigh your baby and check his or her oxygen level yourself. The cardiologist will decide if your baby needs home monitoring. If home monitoring is needed, the nurses will teach you how to use the equipment you will be taking home. Neurodevelopment Children with complex congenital heart diseases have a higher risk for impaired motor skills, language delays, and behavioral and learning problems. Finding these delays early lets your child’s medical team support his or her growth and development needs. This support helps your child have the best outcomes. At the Heart Center, a medical team of doctors, nurses, therapists, and social workers will give you a complete treatment plan for your child. Immunizations All children should get the recommended vaccines (immunizations) at the scheduled times. We encourage all family members and caregivers to have all vaccines updated, including flu shots. These will help protect your baby from life-threatening illnesses. This is extremely important for single ventricle babies. Synagis® (SIN a jiss) This is an important medicine used to help keep your child from getting a serious viral lung infection called respiratory syncytial virus (RSV). RSV is a respiratory virus that can cause serious illness in infants, particularly those with underlying health problems. Children who are eligible for Synagis will receive a monthly injection (shot) during RSV season. Childcare It is best if your baby can stay with a parent or family member during the interstage period. We know this may not be an option for some families. If you or a family member cannot provide childcare during this time, we recommend an in-home caregiver instead of taking your child to daycare. The goal is to keep your baby as healthy as possible for the first 4 to 6 months of life in preparation for their stage II surgery. An in-home caregiver helps to keep your baby from others that may be sick. Circumcision If you would like your child to have a circumcision, we will refer you to a urologist to talk about this procedure. We recommend this be done after your baby has recovered from the Stage II heart surgery. Activities/Sports We encourage all of our heart kids to stay active. We will help you make decisions about the right physical activity. Most single ventricle patients are able to dance, run, and play in recreation leagues in their younger years. These children should be allowed to rest when needed. However, as these children get older, they will not have normal exercise ability and may tire more quickly. Contact sports should be avoided. The cardiologist will talk about the activities that are best for your child as he or she gets older. Smoking Smoke in any form is very bad for all children, particularly heart patients. We recommend your baby not be around someone who is smoking (second hand smoke).
Although having a baby with a heart defect can be scary, most babies born with congenital heart disease will do well as long as they have their medicines and treatments. Your baby will need extra care for his or her heart, as well as all of the other regular well-child care. It is okay to have the same hopes and dreams for your child’s future as you would for any other child. The following are appointments and cares your child will need: Pediatrician Your baby will need regular follow-up appointments to measure growth, development, and nutrition. You will want to find a local pediatrician for routine checkups. Usually, these appointments are every 2 months for well-baby checks and immunizations. Cardiologist Appointments Your baby will have a cardiology clinic appointment about every 2 weeks during the interstage period. The interstage period is the time from the first surgery until the second staged surgery at 4 to 6 months of age. During these visits, your baby will see the home monitoring team, a dietitian, and a cardiologist. Your baby will have an echo and ECG at most visits. Your baby will also have neurodevelopmental testing, which looks at how well the brain is growing. After the second stage surgery, cardiology appointments are every 1 to 3 months. Common Testing Between Staged Surgeries Heart ultrasound (echocardiogram): An ultrasound used to look closely at your baby’s heart and surrounding blood vessels. This will be done to monitor the baby’s heart in between surgeries. Heart catheterizations: A test to measure pressures in the heart, take pictures (angiography), and/or open any narrowings with a stent or balloon. CT scans or MRI scans: Procedure to look at heart function and blood flow. Home Monitoring Home monitoring occurs from the time when your baby goes home until they have their stage II surgery. This could mean that a nurse comes to your home one time a week to check your baby’s heart rate, breathing, oxygenation, and weight. It could also mean that you take home equipment to weigh your baby and check his or her oxygen level yourself. The cardiologist will decide if your baby needs home monitoring. If home monitoring is needed, the nurses will teach you how to use the equipment you will be taking home. Neurodevelopment Children with complex congenital heart diseases have a higher risk for impaired motor skills, language delays, and behavioral and learning problems. Finding these delays early lets your child’s medical team support his or her growth and development needs. This support helps your child have the best outcomes. At the Heart Center, a medical team of doctors, nurses, therapists, and social workers will give you a complete treatment plan for your child. Immunizations All children should get the recommended vaccines (immunizations) at the scheduled times. We encourage all family members and caregivers to have all vaccines updated, including flu shots. These will help protect your baby from life-threatening illnesses. This is extremely important for single ventricle babies. Synagis® (SIN a jiss) This is an important medicine used to help keep your child from getting a serious viral lung infection called respiratory syncytial virus (RSV). RSV is a respiratory virus that can cause serious illness in infants, particularly those with underlying health problems. Children who are eligible for Synagis will receive a monthly injection (shot) during RSV season. Childcare It is best if your baby can stay with a parent or family member during the interstage period. We know this may not be an option for some families. If you or a family member cannot provide childcare during this time, we recommend an in-home caregiver instead of taking your child to daycare. The goal is to keep your baby as healthy as possible for the first 4 to 6 months of life in preparation for their stage II surgery. An in-home caregiver helps to keep your baby from others that may be sick. Circumcision If you would like your child to have a circumcision, we will refer you to a urologist to talk about this procedure. We recommend this be done after your baby has recovered from the Stage II heart surgery. Activities/Sports We encourage all of our heart kids to stay active. We will help you make decisions about the right physical activity. Most single ventricle patients are able to dance, run, and play in recreation leagues in their younger years. These children should be allowed to rest when needed. However, as these children get older, they will not have normal exercise ability and may tire more quickly. Contact sports should be avoided. The cardiologist will talk about the activities that are best for your child as he or she gets older. Smoking Smoke in any form is very bad for all children, particularly heart patients. We recommend your baby not be around someone who is smoking (second hand smoke).
Although having a baby with a heart defect can be scary, most babies born with congenital heart disease will do well as long as they have their medicines and treatments. Your baby will need extra care for his or her heart, as well as all of the other regular well-child care. It is okay to have the same hopes and dreams for your child’s future as you would for any other child. The following are appointments and cares your child will need: Pediatrician Your baby will need regular follow-up appointments to measure growth, development, and nutrition. You will want to find a local pediatrician for routine checkups. Usually, these appointments are every 2 months for well-baby checks and immunizations. Cardiologist Appointments Your baby will have a cardiology clinic appointment about every 2 weeks during the interstage period. The interstage period is the time from the first surgery until the second staged surgery at 4 to 6 months of age. During these visits, your baby will see the home monitoring team, a dietitian, and a cardiologist. Your baby will have an echo and ECG at most visits. Your baby will also have neurodevelopmental testing, which looks at how well the brain is growing. After the second stage surgery, cardiology appointments are every 1 to 3 months. Common Testing Between Staged Surgeries Heart ultrasound (echocardiogram): An ultrasound used to look closely at your baby’s heart and surrounding blood vessels. This will be done to monitor the baby’s heart in between surgeries. Heart catheterizations: A test to measure pressures in the heart, take pictures (angiography), and/or open any narrowings with a stent or balloon. CT scans or MRI scans: Procedure to look at heart function and blood flow. Home Monitoring Home monitoring occurs from the time when your baby goes home until they have their stage II surgery. This could mean that a nurse comes to your home one time a week to check your baby’s heart rate, breathing, oxygenation, and weight. It could also mean that you take home equipment to weigh your baby and check his or her oxygen level yourself. The cardiologist will decide if your baby needs home monitoring. If home monitoring is needed, the nurses will teach you how to use the equipment you will be taking home. Neurodevelopment Children with complex congenital heart diseases have a higher risk for impaired motor skills, language delays, and behavioral and learning problems. Finding these delays early lets your child’s medical team support his or her growth and development needs. This support helps your child have the best outcomes. At the Heart Center, a medical team of doctors, nurses, therapists, and social workers will give you a complete treatment plan for your child. Immunizations All children should get the recommended vaccines (immunizations) at the scheduled times. We encourage all family members and caregivers to have all vaccines updated, including flu shots. These will help protect your baby from life-threatening illnesses. This is extremely important for single ventricle babies. Synagis® (SIN a jiss) This is an important medicine used to help keep your child from getting a serious viral lung infection called respiratory syncytial virus (RSV). RSV is a respiratory virus that can cause serious illness in infants, particularly those with underlying health problems. Children who are eligible for Synagis will receive a monthly injection (shot) during RSV season. Childcare It is best if your baby can stay with a parent or family member during the interstage period. We know this may not be an option for some families. If you or a family member cannot provide childcare during this time, we recommend an in-home caregiver instead of taking your child to daycare. The goal is to keep your baby as healthy as possible for the first 4 to 6 months of life in preparation for their stage II surgery. An in-home caregiver helps to keep your baby from others that may be sick. Circumcision If you would like your child to have a circumcision, we will refer you to a urologist to talk about this procedure. We recommend this be done after your baby has recovered from the Stage II heart surgery. Activities/Sports We encourage all of our heart kids to stay active. We will help you make decisions about the right physical activity. Most single ventricle patients are able to dance, run, and play in recreation leagues in their younger years. These children should be allowed to rest when needed. However, as these children get older, they will not have normal exercise ability and may tire more quickly. Contact sports should be avoided. The cardiologist will talk about the activities that are best for your child as he or she gets older. Smoking Smoke in any form is very bad for all children, particularly heart patients. We recommend your baby not be around someone who is smoking (second hand smoke).
Although having a baby with a heart defect can be scary, most babies born with congenital heart disease will do well as long as they have their medicines and treatments. Your baby will need extra care for his or her heart, as well as all of the other regular well-child care. It is okay to have the same hopes and dreams for your child’s future as you would for any other child. The following are appointments and cares your child will need:
Pediatrician
Your baby will need regular follow-up appointments to measure growth, development, and nutrition. You will want to find a local pediatrician for routine checkups. Usually, these appointments are every 2 months for well-baby checks and immunizations.
Cardiologist Appointments
Your baby will have a cardiology clinic appointment about every 2 weeks during the interstage period. The interstage period is the time from the first surgery until the second staged surgery at 4 to 6 months of age. During these visits, your baby will see the home monitoring team, a dietitian, and a cardiologist. Your baby will have an echo and ECG at most visits. Your baby will also have neurodevelopmental testing, which looks at how well the brain is growing. After the second stage surgery, cardiology appointments are every 1 to 3 months.
Common Testing Between Staged Surgeries
Heart ultrasound (echocardiogram): An ultrasound used to look closely at your baby’s heart and surrounding blood vessels. This will be done to monitor the baby’s heart in between surgeries. Heart catheterizations: A test to measure pressures in the heart, take pictures (angiography), and/or open any narrowings with a stent or balloon. CT scans or MRI scans: Procedure to look at heart function and blood flow.
Home Monitoring
Home monitoring occurs from the time when your baby goes home until they have their stage II surgery. This could mean that a nurse comes to your home one time a week to check your baby’s heart rate, breathing, oxygenation, and weight. It could also mean that you take home equipment to weigh your baby and check his or her oxygen level yourself. The cardiologist will decide if your baby needs home monitoring. If home monitoring is needed, the nurses will teach you how to use the equipment you will be taking home.
Neurodevelopment
Children with complex congenital heart diseases have a higher risk for impaired motor skills, language delays, and behavioral and learning problems. Finding these delays early lets your child’s medical team support his or her growth and development needs. This support helps your child have the best outcomes. At the Heart Center, a medical team of doctors, nurses, therapists, and social workers will give you a complete treatment plan for your child.
Immunizations
All children should get the recommended vaccines (immunizations) at the scheduled times. We encourage all family members and caregivers to have all vaccines updated, including flu shots. These will help protect your baby from life-threatening illnesses. This is extremely important for single ventricle babies.
Synagis® (SIN a jiss)
This is an important medicine used to help keep your child from getting a serious viral lung infection called respiratory syncytial virus (RSV). RSV is a respiratory virus that can cause serious illness in infants, particularly those with underlying health problems. Children who are eligible for Synagis will receive a monthly injection (shot) during RSV season.
Childcare
It is best if your baby can stay with a parent or family member during the interstage period. We know this may not be an option for some families. If you or a family member cannot provide childcare during this time, we recommend an in-home caregiver instead of taking your child to daycare. The goal is to keep your baby as healthy as possible for the first 4 to 6 months of life in preparation for their stage II surgery. An in-home caregiver helps to keep your baby from others that may be sick.
Circumcision
If you would like your child to have a circumcision, we will refer you to a urologist to talk about this procedure. We recommend this be done after your baby has recovered from the Stage II heart surgery.
Activities/Sports
We encourage all of our heart kids to stay active. We will help you make decisions about the right physical activity. Most single ventricle patients are able to dance, run, and play in recreation leagues in their younger years. These children should be allowed to rest when needed. However, as these children get older, they will not have normal exercise ability and may tire more quickly. Contact sports should be avoided. The cardiologist will talk about the activities that are best for your child as he or she gets older.
Smoking
Smoke in any form is very bad for all children, particularly heart patients. We recommend your baby not be around someone who is smoking (second hand smoke).
