What did I do wrong? This is the first thought I had when the doctor came in to tell my husband and I that our second child had a birth defect. (Learn more about the most common birth defects in this post for Zulily.) I remember the doctor coming in after our 20-week anatomy scan with a stack of paperwork. He started using phrases we did not understand and telling us about an issue with our baby’s heart. What we did know is the heart is a pretty important organ so having a problem felt monstrous. As we went home with that paperwork, I sought answers for what I did wrong to hurt my little girl.
Desire to Find the Cause of a Birth Defect
Congenital defects, or birth defects, do not always have an identifiable cause. This is not comforting for someone like myself who loves to find the answers and grasp for control. We did genetic testing. We did an amniocentesis and up information. After her birth, we did more testing and labs. We never found a clear answer. Neither my husband nor I have identified genetic defects. Our first born also does not. This was a shock and even though birth defects are found in 1 out of every 33 births, it felt new and challenging and sometimes lonely.
We wanted to find a cause, but truly it seemed to be an in-utero “fluke” that we experienced.
Once our daughter was born, more issues were identified. What started with low blood sugar at birth became failed attempts to breastfeed. She was not getting milk out and not gaining weight. As a mother who breastfed my first for 16 months, this felt crushing. I again asked myself what I did wrong and if I had caused a difficulty with my newborn. On her second night in the NICU, we were able to identify a cleft palate, another unexpected complication.
Reducing the Risk of Birth Defects
What we know about congenital abnormalities, or birth defects, is there are some things you can do to reduce the risk. These are actions are common healthy choices for everyone, but specifically those who are trying to get pregnant or are currently pregnant.
These steps include eliminating alcohol, drugs, and tobacco. It also includes avoiding chemical exposure in the community, home, or workplace. Also, it is recommended that women who are expecting or trying to conceive take folic acid regularly to promote neural tube development. Another important factor worth noting is removing yourself from any instances of domestic violence. If your partner or another family or friend is violent, this can harm both you and the baby. Reach out for help if needed.
Behind the Scenes after a Birth Defect Diagnosis
Both times that we received a birth defect diagnosis, I felt shitty. I felt like I had broken my child. There was fear around what the birth defect would mean and how it would impact our lives. The conversations with doctors felt weighty and out of my league. The Google searches felt daunting. There were many days and nights spent crying in my bed with my husband, who was able to take a few days off after her first diagnosis.
I knew the world was not over, but it sometimes felt like it was crashing in on us. In some ways, I put up walls to protect myself. In other ways, I let down walls to let vulnerable and authentic connections in. It made me more in tune with myself, my husband, my son and our closest friends. It reminded me that some of the small things we commonly stress about were truly small.
There was anger.
There was sadness.
There was comfort.
It was the first time in my life that I gave myself permission to feel all these things at once. The first time I realized I could not always hold it together and have control for myself or anyone else. A season that made the world feel so big and at the same time, so small.
The Self-Care Work for Birth Defect Parents
My daughter’s birth defects are not about me, and it almost feels selfish to talk about the ways it has grown me, but it is also so important. Our children are their own unique beings, and they are also so intertwined into who we are as parents and changing humans.
My child’s birth defects called out a need and a freedom to grow. The struggle and surprise opened me up to more vulnerability. The Chelsea who spent so long trying to keep others happy, no longer had to. Chelsea who longed for control, no longer had the ability to have it. The Chelsea who was a people-pleaser to the point of neglecting herself, no longer could. Chelsea who built walls when she felt too exposed, tore them down.
Being a parent is so sanctifying and spiritual anyways, but being a parent of a child with a birth defect is a level of growth I never anticipated. It means drawing boundaries others might not understand. Also, it means reaching out for help even when it feels uncomfortable. This requires learning things you will never receive a degree for, but probably could. It means clinging to your support in deeper ways. It means examining within more frequently.
My Words to Birth Defect Parents
If you are a parent of a child with a birth defect, or you are pregnant with a child who has a birth defect, I am glad you found your way here.
First of all, hello.
I know you spend so much of your time addressing other’s needs, primarily your child’s, so I want to remind you that I see you. I see you as a mom or a dad. As an individual full of growth. I see you and the way you are putting one foot in front of the other each day.
Secondly, it is okay to loosen the grip of control.
I know first hand how much we want to control the environment and circumstances for our kids. However, I know it is not always possible. It’s easy to drive ourselves crazy trying to put together pieces, but not everything in life is a puzzle. Remember, your kids also learn from the energy they feel from you. Sometimes, especially when things are out of our control, one of the best things we can do is give a supportive and connected environment to our kids. Having that environment starts with giving ourselves space for our own growth and care. Remember, caring for yourself is a very important part of parenting.
Third, it is okay if this changes your life.
Big changes are scary, and they can also be revolutionary. If you struggle to accept help from others, this is a great time to change that. As someone who finds it hard to give yourself time to relax and recover physically or emotionally, this is a great time to change that. Do you struggle to communicate and connect with your support system? This is a great time to change that. It’s big. It is difficult. But, it is life-changing and usually in really good ways. We cannot control birth defects, but we can control the impact they have on us. We can choose growth in this trying season.
Lastly, you do not have to be strong for everyone.
I am positive that you are a strong person. You give and your support others. Strength is a trait you hold dearly. You do not have to let go of that trait in order to let go of it sometimes. Give yourself space to have the feelings and experiences you need. Acknowledge the grief and fear you feel. Grant permission to yourself to be nurtured. It does not take away from your strength, it adds to it.
Birth defects can be surprising and scary. They can throw a wrench into your routines and expectations. However, you are not alone. You have not failed your baby. You are allowed to feel many things at once. And one day, I think, you will look back at the first diagnosis day and see a day you grew in unexpected ways.