1. Accepting your thoughts and feelings

When you have received unexpected news, you may experience lots of different emotions: fear, uncertainty, worry, guilt and sadness. Sometimes, these emotions can come and go, sometimes these emotions can stay for a long time. Parents have described an “emotional rollercoaster”.

You may also find yourself having many challenging thoughts. You may be asking yourself what you did to cause the diagnosis or wonder how you will cope with things to come. Some mothers have described thoughts that a miscarriage may help protect the baby and family from the uncertain or potentially hard future. Some mothers worry about whether they will love their baby enough, particularly if they have a visible difference. For some, the decision-making about tests and the continuation of pregnancy prompted a range of difficult thoughts. Some parents don’t have these challenging thoughts come up, and then they can wonder if they are just in denial.

Please know, there is no right or wrong way to think or feel. Your thoughts and emotions will be influenced by many things and often stem from a place of wanting to protect your baby and your family. These thoughts and emotions can be a normal response to an unexpected diagnosis. It doesn’t make you any less of a parent and it doesn’t mean that you won’t be able to manage what is ahead. Acknowledging that your thoughts and emotions as part of your processing can be a helpful way to accept the whirlwind that can come and help nurture space for hope.

 

2. Get to know your baby

Bonding is a very typical and important part of pregnancy; however, bonding and attachment can be tricky for many reasons. A prenatal diagnosis can mean that some parents find it harder to bond with their baby, especially when there are concerns about whether the baby will live and how it will grow. Some parents ‘shut down’ bonding to try and protect themselves from an uncertain future. The diagnosis itself may also mean that pregnancy care has become more medical-focused, rather than focused on the growing baby. Other parents may not have any difficulties bonding after a prenatal diagnosis.

Bonding can help you prepare for the next stages when you are holding your baby in your arms. Bringing focus back to your baby, rather than their diagnosis can be an important way to find hope. All new babies need love and nurture, their care and milestones can look different, but they all need to be nurtured. It can help to think about your baby as a newborn rather than racing ahead to think of the possibilities in the far future.

Allocate time for focusing on your baby, and get to know your baby for the individual they are. When is your baby most active? When is your baby quiet? Do they hiccup, kick and wiggle? Do they respond to different music or your words? Have you chosen baby clothes or special blankets for their first few days here? Some parents may find it helpful to wonder who their baby may look like the most, and what their personality will be.

If you notice that your bonding has been affected by the prenatal diagnosis, please know that it’s never too late to rebuild that. You haven’t harmed your baby or your connection, rather you have been coping with the unexpected. If rebuilding the connection is particularly challenging, it’s important to reach out and get some support. You can also read our other resource, specifically on bonding.

 

3. Record your pregnancy experience

A pregnancy journal can help you make sense of your thoughts and feelings, and keep track of pregnancy milestones and all the things you learn about your baby along the way. Photos can be a lovely way of recording your growing bump or your partner’s growing belly. It’s also a nice way to remind yourself that while you may be having a baby who has a diagnosis, you are still having a baby. Find ways to see beyond the diagnosis by documenting all the highs and lows of your pregnancy. Focus on the nurture you are offering your baby while growing in the womb.

 

4. Seek community support groups

Connecting with other parents who have walked a similar path can provide you with a sense of hope and encouragement. Sometimes this hope comes from seeing and hearing success stories, where babies and children have achieved more than doctors predicted. However, hope can also come from stories where outcomes are as doctors predicted or even the ‘worst-case’ scenarios, because you can see that beyond the diagnosis there is still a baby or a child, and there are still typical moments of parenting and family life. Real-life stories can help you feel prepared, by showing you the many ways that life can look and be.

Parents and people with a similar condition or difference can provide access to information that health professionals can’t offer you. They can also offer you a sense of community and understanding that can only come from a shared lived experience.

It is important to know that while there are shared experiences within support groups, there are also many differences in the circumstances and situations. Sometimes, people join support groups because they need more support than others who may have that diagnosis. Sometimes people have not had the same opportunities as your baby may have growing up. Others may have access to services and support that you and your baby don’t, or they may have different ways of coping and different levels of understanding about the diagnosis. Keeping these differences in mind can help you navigate support groups, while still being able to access the wonderful connection and understanding offered.

Support groups may be condition or diagnosis-specific or broader groups that focus on pregnancy, disability or perinatal mental health. They can be online or in person.

 

5. Focus on “can” rather than “cannot”

Remember, the “worst-case scenario” is just one scenario. All babies develop differently and are unique no matter what their diagnosis. When you find yourself focusing on the things you won’t be able to do as a parent or what your baby will not be able to do, try reframing those thoughts to focus on what you and your baby can do. For example, you may not be able to breastfeed due to your baby being in a humidicrib but you can express milk and nourish your baby in this way. Practice reframing your thoughts to give you hope for the future.

Some parents have found help by considering the ways they can keep doing their normal and enjoyable family activities after their baby has arrived. People who like to trek or travel may consider how these adventures can still occur if a baby or child has a disability or medical need. Finding normality in the unexpected can help nurture hope.

 

6. Celebrate milestones unique to your baby

The trajectory of your infant’s development may look different but there will still be genuine milestones to find joy in, like first-born baby photos, first feed, first cuddle, etc. Be creative with milestones by thinking outside of the box and what applies to your unique baby. For example, first tube-feed, first pram-walk in the sunshine and first nappy change.

 

7. Self-advocacy

Medical professionals tend to talk in “worst-case” scenarios which may be confronting for families, and this isn’t because they want to upset you, but they do have a medical responsibility for you to know what may occur. There are many court cases where parents have sued medical professionals after feeling they weren’t fully informed of the harder scenarios or fully informed of their option to end their pregnancy. This very real potential for litigation and the ethical concern of not letting parents know can mean that medical professionals seem to focus on the worst-case scenario or continually offer termination.

When there’s a focus on all the potential ‘problems’, it can be difficult to feel hopeful.

It’s okay to be direct with your care and what you need. You can voice to healthcare providers if there are certain things you don’t want to know or focus on. You can ask them to document that you no longer want to be asked about termination, if that is your wish. You can clearly state that you are aware of the potentials and would like to focus on hope and planning for delivery.

You can choose and direct aspects of your care. Some parents find photos of ultrasounds to be helpful and wonderful keepsakes. Others find them to be a distressing reminder. You can voice this and ask that your ultrasound professional keep photos on file in case you want them in the future, or you can ask the sonographer to help point out all the typical aspects of your baby’s development and enjoy that moment to connect.

 

8. Self-growth

It may not feel like it right now but you are about to embark on a journey where you will grow, learn, and discover a depth of love and strength within yourself that may surprise you. Each day may present new challenges, these challenges present opportunities to grow and learn about your unique baby and how you will live life together.

 

9. Focus on what you can control

Your pregnancy care and initial birth plan may need to be altered but try to think of ways you can feel more in control of what is to come. Talk to your healthcare providers about your hopes and alternative options if you can no longer birth or care for your baby postpartum as you had expected. If your baby may need to stay in the neonatal intensive care unit (NICU), these resources may help you prepare and feel in control in the NICU environment.

 

10. Celebrate the present

Amidst the worries about the future, slow down and appreciate the present moment. Hope can look like many things. Hope may be about the way you can show your baby love. You may think about the way you and your baby will grow together. If the future is uncertain, you may find hope in knowing that your life has meaning and purpose and has already changed a part of you and your family.

No matter the anomaly difference or diagnosis, you can find meaning in special moments with your baby and within parenting.