Taking a baby home after delivery is the start of an amazing adventure – but it is also a challenging time for every family.

There is even more stress when your family leaves the hospital with a baby knowing it has CHD and will need surgery. At times you may be afraid that your child is in danger, or feel overwhelmed by your parental responsibilities.

The medical team and nurses at the hospital will teach you many things about caring for your baby, but you may still worry that you will not know how to do everything when you get home. It is very common for parents to forget things and need additional help.

There is a lot to learn as you prepare to discharge from the hospital. Feel confident that with every day and week that passes at home, you will better understand how to care for your child while preparing for surgery.

Keep in mind that you do not have to go through this CHD care journey alone. Be sure to reach out to others for help and advice, and get the emotional support you need along the way.

If You Take Your Baby Home Before Heart Surgery

  • Know who to call when you need medical advice

    Before you go home, make sure you have a list of all the phone numbers you need to reach the care team. You can call them with questions about small or big problems, and when you are uncertain what your baby needs. For questions about medications, or if your child needs to see a physician, you can call either a support nurse or another member of the care team, your pediatrician, or your pediatric cardiologist.

  • Find people who can support you

    While you’re in the hospital, try to build a support network for when you are home. A support network includes people who you trust and feel comfortable talking with about your challenges. For support from someone who understands what you are going through, you may want to talk about parenting and personal challenges with another parent or parent mentor that you have met. There are many ways to connect with other CHD parents.

  • Talk about your feelings

    If you have constant anxiety about taking care of your child at home, discuss these feelings with your support system, your own physician, or your child’s care team. Many parents ignore these feelings for a variety of reasons – including because they’re overwhelmed, embarrassed, ashamed, or feel guilty. Avoiding dealing with your emotions can worsen anxiety or depression, which can in turn impact the whole family.

  • Enjoy the time with your baby

    You may feel relieved to have weeks or months at home with your baby before they need heart surgery. This time together gives you both the chance to bond before the next phase of this journey, which can be more stressful. It also allows your baby time to develop the skill of feeding well and to grow before surgery. Try to learn more about your child’s procedure and what to expect during the recovery.

  • Understand that the plan can change

    Sometimes a surgery needs to be cancelled at the last minute because of an emergency or a shortage of intensive care beds. This sudden change in the timing of your baby’s heart surgery can be very stressful – especially if it happens more than once. If your child’s surgery is rescheduled and you have difficulty coping, try to focus on the fact that a more urgent case took your child’s place. Many parents feel some relief knowing that their child’s condition is stable enough for their surgery to be postponed.

PARENT TIPKeeping Your Baby Healthy Before Surgery

When you are close to the operation date, take extra precautions to keep your baby healthy. This includes limiting visitors and avoiding contact with anyone who has recently been sick – even it if was a minor illness. If your child develops only a mild cold, the physicians may reschedule the surgery to make sure that it occurs under the best possible conditions.