Bonding With Your Baby after a CHD Diagnosis

Bonding with an unborn baby with a congenital heart defect can be hard, but also valuable. When parents bond with their babies in the prenatal period, they often find it easier to build and sustain that bond after birth. Well-bonded parents may be more responsive and engaged with their babies, and better able to support their babies during hospitalization and medical treatments.

In general, stronger parent-baby bonds during pregnancy are associated with better outcomes after the birth, including:

• better child mental health

• better parent mental health

• more secure parent-child attachment

• better child self-regulation

Babies' first relationship is with their primary caregivers, who are usually one or two parents. Through their relationship with their parents, babies start to learn how the world works, and how they connect with other people.

Babies do best when they are able to establish a secure attachment with their parent(s). When babies have a secure attachment, they trust that their parents will meet their needs and keep them safe. They learn to co-regulate their behaviors, emotions, and body functions along with their parents, as parents hold them, comfort them, and care for them. When babies develop this secure attachment, they feel grounded and safe, and they become developmentally poised to explore and learn.

Deliberately bonding with a baby before birth can help forge the foundation of a secure attachment. When a baby is born, a bonded parent is usually attuned to the baby's needs, and prepared to respond to them with love.

Babies and children with congenital heart defects are just as adorable and delightful as any other little ones. From day one, they all have unique personalities, and distinct preferences. As they get older, they develop their own interests and habits. They invent games, they sing songs, they tell stories, and they misbehave. They become essential members of their families and communities. Like all children, children with congenital heart defects share some traits with their parents and siblings, and have other traits that are wonderfully their own.

Parents can begin to anticipate their own child with these strategies:

• Connect with other families who have children with the same diagnosis. Ask to see pictures and videos of their child at different ages. Ask parents what they remember being special about their child at each age.

• Look at cute pictures of babies in a CICU or NICU. A Child Life Specialist or other member of a hospital care team should be able to help find these pictures. A good place to start can be pictures of babies in the NICU dressed up in costumes: the playfulness of these photos can reduce the potentially-scary elements. Focus on seeing the baby behind the medical equipment. Look at the little nose, the tiny hands, and the cute little personal touches such as a bow, a hand-knit blanket, or a stuffed toy.

• Ask a parent of a former NICU or CICU baby to show you a picture of their hospitalized baby, and to talk through what they see when they look at their baby.

• Every day, take at least a few minutes to try to imagine your baby after birth:

  • How will they feel in your hands or against your chest?

  • What will their hair look like and feel like?

  • Can you imagine that special baby smell of their head?

  • Imagine the quiet baby sounds: little smacks and grunts.

  • Try to feel the weight of your baby in your arms, and their warmth against your body.

  • Try picturing their face, their feet, their hands.

  • Imagine the softness and warmth of their skin if you touch them with your hands or your lips.

When preparing for a baby with a complex heart defect, worry can sometimes overtake any sense of happy anticipation. However, if parents can find ways to enjoy their unborn baby, then they can often feel calmer and more connected.

For example, you might want to try:

• Looking for the outline of little feet pressing against your abdomen, and gently pressing back

• Feeling the tickle of your unborn baby hiccuping

• Noticing patterns of when the baby seems to be awake or asleep

• Making something for the baby: writing a note, knitting a blanket, designing a shirt, recording a song

• Planning family photographs with the baby, which could be in the hospital or after discharge home

• Practicing loving kindness meditation: sitting or lying still, breathing with awareness and intention, and deliberately sending wishes to the baby such as: "May you feel safe. May you feel peace. May you know that you are loved. May you find calm when things are hard."

When a baby is diagnosed with a congenital heart defect, parents sometimes feel unsure of their role. They may feel like doctors and nurses need to take charge of the baby and act as the baby's caregivers.

However, parents are always the best experts on their own baby, and they are always their baby's most important caregivers. Doctors and nurses can help, but babies rely on their parents for security, nurturing, consistency, and love.

A pregnant parent is literally providing everything physical that a baby needs to live and grow. If they want to and are able to, parents can also focus on embracing their role as their child's nurturers. Such prenatal preparation can make it easier for parents to continue to claim the role of caregiver after a baby is born.

While pregnant, you can focus on your role of caregiver and nurturer by:

• Taking a deep breath, and imagining the oxygen traveling to the baby.

• Eating a nutritious meal, and visualizing all the energy going to the baby, and the baby sampling the flavors in the amniotic fluid.

• When the baby is moving a lot, standing and swaying back and forth, and noticing if that rocking motion seems to calm the baby.

• Talking to the baby, telling them about your day, about your hopes and fears, and about what they mean to you. Remember: babies recognize their mother's voice at birth!

• Singing and reading to the baby. If you sing the same song or read the same book many times, the baby will recognize it at birth.

• Gently rubbing or stroking the baby's body through your abdomen, and feeling them respond.

We know that babies with congenital heart defects are happier and do better when their parents are able to provide as much care as possible. We also know that parents are happier and healthier when they are able to care for their own babies.

During the latter part of pregnancy, you may want to prepare to care for your baby in the hospital, so that you feel confident when the baby arrives.

Preparing could mean:

• Meeting with the care team, and talking about how parents can most fully participate in taking care of their baby.

• Asking the team when and how parents can expect to participate in daily care activities such as:

  • holding and touching

  • feeding

  • bathing

  • dressing

  • soothing

  • assisting with therapies

  • playing and moving

• Learning about Developmental Care and Kangaroo Care

• Visiting the hospital, and watching a parent care for their baby

• Asking the care team to show you the diapers, clothing, blankets, hats, pacifiers, bottles, and medical devices the team will use to care for the baby, and making sure you feel comfortable handling them.

• Talking with other parents about their experiences directly parenting babies in the hospital, and getting their advice

Understandably, parents are often intently focused on the wellbeing of their baby, and may have little regard for themselves. But if possible, parents should also try to be mindful of their own mental and physical health. Remember: babies rely on their parents to be engaged and consistent, and parents can have trouble meeting their babies' needs when their own needs are unmet.

As you prepare for your baby, try to monitor your own feelings. You do not need to spend all your time thinking about the baby, and you can always pause, rest, and take time for yourself.

Some worry and stress are normal, but stress can also get better with therapy, social support, and self-care. You deserve to feel as good as possible.

If you start to feel overwhelmed or hopeless, please reach out to a doctor or go to an emergency room.

Some hospitals have prenatal stress reduction programs specifically for parents expecting babies with congenital heart defects. Other hospitals do not have such programs, but can refer expectant parents to resources in the community. Help is always available, and someone is always there to listen to your concerns. You will get through this, and you do not need to do it alone.