Hearing that your baby has been diagnosed with a birth defect or other medical condition during your pregnancy can be devastating. Aside from the medical implications, it sets off an initial grief process that often makes parents feel powerless to do anything to help. But the good news is that there are steps you can take after the diagnosis to make sure the care you and your baby receive is the best it can be:
Knowledge is power, as they say. The more you can learn about your baby’s condition, the more you can feel a part of the treatment team. Data supports that learning about you and your baby’s condition often reduces anxiety, relieves guilt, and empowers you to be the best parent you can be for your child. It’s important, however to find reputable sources. Relying on hearsay or a random web search can lead to misinformation and make the entire experience worse. The Fetal Concerns Center at Children’s hospital of Wisconsin considers you as part of the treatment team, and is happy to provide you with information and resources that can help. Don’t be afraid to ask questions.
Get a second opinion
After receiving a fetal diagnosis, it’s common to feel the urge to start medical care right away. However, it’s important to learn what your options are. A highly skilled and experienced fetal care team can make all the difference in helping you and your baby through this difficult time. Even if the second opinion confirms the diagnosis, you likely will learn a lot more about the condition and treatments for it.
Organization is key
Any pregnancy is filled with several appointments, but a fetal diagnosis can require even more. That means you will have a lot of places to get to, and a lot of information to sift through. People like the nurse coordinators at our Fetal Concerns Center will stand by your side, help you work out a system to keep track of everything that keeps you and the people in your support system as up to date as possible. This could include resources to help your other children as well. You’ll have a lot to deal with as it is, so staying on top of as much as possible can help you not feel as overwhelmed.
Prenatal care teams will work with you and your doctors to develop a plan to help you achieve the best outcome for your situation. Whether the plan calls for a possible fetal surgery, care for after your child is born, or (sadly) palliative care, anything you decide to do will likely work better if you’re able to develop a plan ahead of time.
Find your support
As important as friends and family can be in helping you get through this trying time, outside support also can be a good idea. There are support groups on the internet and social media filled with people who have gone or are currently going through the same thing you are. You can tell them things you might not be comfortable sharing with others who don’t know the situation firsthand.
The day of birth is often a day of mixed feelings — there is joy, but also fear and loss of control due to the circumstances. We will work with you in planning the delivery to achieve your goals of care for both you and your baby. Discussions might include the best modes of delivery, but also include opportunities for bonding and neonatal goals of care.
Don’t forget about you
Much of your attention will naturally be focused on your child, but that means taking care of yourself, too. Follow your OB’s advice on how to keep yourself healthy. When possible, try to bring some normalcy back to your life by doing things you enjoy whether it’s taking in a movie, going out with friends or pursuing your favorite hobby.
It’s key to remember that although you will have a medical team lending their expertise, you will always be your child’s strongest advocate. No one knows your body or your child like you do, so always speak up when something isn’t clear or if you have concerns. Following these tips can only help achieve the best outcome for you and your baby.
If your baby has been diagnosed with a birth defect or other medical condition during your pregnancy, we can help. Our Fetal Concerns Center offers compassionate, individualized care for you and your baby — from pregnancy to delivery and beyond.
Learn more about Steven Leuthner, MD, MA.