You have been waiting to see your baby with a mix of hope, love, and fear about how CHD may affect their life. After planning for so long, your baby has finally arrived.

As you look at this new life that you welcomed into the world, you wish to hold and feed them, and to give them your love. But your baby is in a hospital bed. They may be connected to many machines and receiving constant medical care.

After delivery it is common for CHD parents to feel a lot of emotions when they cannot connect with and protect their baby. These feelings may be especially strong for the mother who is physically recovering from delivery, extremely tired, and experiencing emotions associated with hormonal changes.

You may feel helpless and like everything regarding your baby is uncertain and out of your control. Many parents find some relief from these feelings by getting emotional support. It can also help if you understand what is happening in the hospital during the first few days.

Whether your baby is seriously ill and immediately needs a procedure, or if you will take your baby home before surgery and schedule surgery for a later date, the first few days are filled with medical tests. These tests help the medical team learn how to manage your baby’s condition and make the best plan of care for their CHD.

Basic Things to Know After Delivery

  • Where will my baby go?

    It is common for babies with CHD to be in some form of an intensive care unit (ICU) after birth. In cases of very mild CHD, some hospitals may place the baby in a nursery with less intense monitoring and care. This may be called a stepdown nursery, a well baby nursery, or an acute care nursery. The physicians will only do this if they feel that your baby does not need the level of care provided in an ICU.

  • Where does the mother go?

    After delivery, the mother will recover in an area of the hospital that has the level of care she needs. Sometimes the partner stays with the mother, but they can also go to the ICU or nursery waiting area with the baby. It may be possible for a second support person to step in and be with the mother if her partner leaves the birth room.

  • How will the care team help my baby?

    As your baby receives initial treatment after birth, the care team will get them settled into the ICU or nursery and possibly connect them to IV lines so they can receive fluids or medications. Usually parents are not at the bedside for this initial settling in, and it can be an anxious time because you are waiting for updates.

  • When/how will I get information about my baby?

    It may take several hours to hear any substantial information about your child. The medical team may need to do tests, review the results, and discuss the care plan. All of this takes time. You can get information about your child’s general status by asking the front desk for an update, and usually they can contact the bedside nurse. If a partner goes with the baby, they can send information about the baby’s status to the mother or second support person via text message.

  • What are the rules for visitors?

    Every hospital has rules you must follow when visiting your baby. This includes washing your hands, limits on the number of visitors, and possibly special visiting hours.

  • Who is my baby’s nurse?

    Your baby’s bedside nurse is an important source of information and support for you. Nurses work in shifts that alternate daily, but some hospitals try to match up nurses with patients they’ve had before. This means that if you have a long stay, you may have some regular nurses taking care of your child. As a nurse gets to know your baby, they will better understand how to care for your baby’s unique needs.

  • What medical tests will my baby need?

    Even if you had many tests before delivery, it is important to evaluate the baby’s condition with additional testing after birth. That’s because many things change in a baby’s body at birth. Looking closely at the baby after birth tells the physicians how your baby adjusted to these changes. Always talk with your care team if you have questions about any tests or test results.

Common Tests for Babies With CHD

Your baby will undergo these routine tests in the first few days after delivery.

1. Head Ultrasound

This is a safe and painless test that uses the same ultrasound technology as the 20-week anatomy scan and the fetal echocardiogram. A head ultrasound looks at some parts of the brain, and it can see if there has been any bleeding in the brain.

2. Abdominal Ultrasound

This test can diagnose some abnormalities in the organs located in or near the abdominal cavity. It also uses ultrasound technology that is safe and painless.

3. Echocardiogram

This is an ultrasound of the heart. Even if your baby’s CHD was diagnosed before birth, the physicians may be able to see more detail in images after delivery and get additional, important information from this echocardiogram.

4. Newborn Screening

This test can diagnose genetic or metabolic conditions that may cause health problems in the future. In the U.S., each state gives screening tests to all newborns for early diagnosis of conditions that would otherwise be missed.

Special Tests Your Baby May Need

Some babies with CHD need more advanced tests. If your ICU care team orders a test that you did not anticipate, they will explain why and what they hope to learn from the results.

Heart Catheterization

This provides physicians with specific types of information that an echocardiogram cannot. Your child will go to a special lab in the hospital where they are sedated for the procedure. A safe dye is injected into your child to help the physicians see what they need to in images of the heart. This study can take up to 6 hours but the length of time varies widely.

CT Angiogram

This is a type of X-ray that takes very detailed images of the heart anatomy. The CT angiogram may also use a dye injection to outline parts of the heart anatomy. This test is relatively fast so your child may not need to be sedated.

Magnetic Resonance Imaging (MRI)

This is an imaging technique that uses magnetic fields to create images of the organs in the body. This test usually requires the child to be sedated.

The First Few Days After Birth

I didn’t feel like I met my newborn until 3 or 4 hours after he was born.

Ari, CHD Parent

PARENT TIPThe Care Plan Can Change After Birth

Sometimes a baby’s CHD is accurately diagnosed before birth, and parents are counseled about postnatal testing during prenatal counseling with the fetal cardiologist. In these lucky cases, parents may feel the care after delivery is very smooth, familiar, and low stress.

However, there are times when a baby’s heart condition is not accurately diagnosed or not diagnosed at all before birth. When this happens, it can be a highly stressful time for parents.

Some cases of CHD are also more complex and there may be several treatment options. When this is the situation, the physicians may take several days after delivery to discuss the options and consider their benefits before deciding on a care plan they believe will lead to the best outcome for your child.

FAQs

Many people will be on your care team while you’re in the hospital, and in most hospitals the people on your team will frequently change. It will help you to learn about the different types of medical professionals and how to communicate with your care team in the hospital.

You are going to be at the hospital, and you may be preoccupied with your infant’s care there for some time. Before delivery, think about what needs to be taken care of at home. Do you have other children? Can relatives or friends care for them at home? Do you have pets to arrange care for? Plants to water, mail to take in? Friends and family can be of great help to you if they can take care of these while you are away. Once you bring the baby home, you may need help still. You could ask friends for help with family meals through a calendar or program like Meal Train.

Emotional support can help mothers deal with the many changes and feelings they have after delivering a baby. This includes changes in body and mindset, a lack of control over your child’s care, and other challenges. Many mothers benefit by getting emotional support after birth. Ask your hospital about the emotional support—such as counseling or spiritual support—that is available to you while you are a patient and after you go home. Some hospitals can help you find a parent mentor or support group, and there are many ways to connect with other CHD parents for support.

When you’re in the hospital you still have to meet all of the basic needs and life logistics that you have outside the hospital—plus you are caring for a newborn. In addition to emotional support, hospitals can provide many types of practical support. If you or your child have an unmet need in the hospital, ask your nurse and social worker for advice on how to get help. You can also get tips for navigating your hospital stay from online resources and other parents.

Babies with CHD may or may not be able to breastfeed after birth. Ask your care team what to expect in your situation.

If you want to breastfeed and it’s not possible – for example, if your baby has a feeding tube – you can pump using breast pumps provided by the hospital, and then store your milk in hospital freezers to use later. Many hospitals have a quiet room that is just for breast pumping in private (often somewhere near the Neonatal ICU or NICU). Ask to see a lactation specialist if you need help with pumping or getting your baby to latch.

A long, thin, and flexible tube called a catheter is inserted into your child’s blood vessel – usually at the top of their thigh. This tube is about the size of a spaghetti noodle. It measures your baby’s blood pressure and injects a safe dye material into their heart and blood vessels. While the dye is injected, physicians film an X-ray image that shows where the dye travels. By observing the shape of the dye, the physicians can see the heart anatomy or vessel anatomy.

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