How to Make Decisions When the Choices Seem Impossible

Father consoling his partner

Finding out that your child has Trisomy 18 is incredibly difficult and overwhelming. You may feel a range of emotions. You may feel that you’re in shock. You may be overwhelmed by the medical information you have been given and feel paralyzed about making decisions or moving forward. All of these feelings are completely normal.

It’s critical, though, that you give yourself the time, support and space you need to process what is happening and make informed decisions about your child’s health. Going through a diagnosis of Trisomy 18 for your child will never be an easy experience. But by ensuring you have access to the support you need, you can help yourself cope with the reality of your child’s diagnosis and deal with the emotional toll the decision-making process will take on you.

Here are some ways to help ensure you have the tools and resources you need to go through this gut-wrenching process.

Rally Your Support Network

A robust support network is critical. Make sure you have the support in place you need to help you navigate this journey. A partner or spouse, family members, healthcare providers, counselors, spiritual advisors, friends—whoever you need to help you as you embark on this difficult journey and make decisions for your child. Rallying your support network will help provide you with the support you need to endure this difficult time.

Take Your Time

It is critical that you stop and process the news of Trisomy 18 before making any quick decisions. Take some time. You may feel pressured to make a decision immediately but don’t be afraid to take the time you need to process the information you’ve been given and deal with the intense pain and grief you may be feeling. Don’t make any hasty decisions. Get away and take some vacation time, even if it’s just a long weekend. Go somewhere relaxing and restorative for you—a country inn, a bed and breakfast, the beach, camping, a favorite place, whatever allows you to clear your head and cope with your emotions.

Don’t Be Afraid to Grieve

Grieving when you receive a diagnosis like Trisomy 18 is very natural and is part of the process of coming to terms with the diagnosis. Let out your emotions so that you can deal with the pain, the anger, and the sadness you feel. Talk to your partner. Write in a journal. Cry and scream. Take a walk. Talk to your counselor or minister. Do whatever makes you feel comforted and supported and allows you to experience your emotions.

Explore Your Options

Learn as much as you can or would like about each option presented to you. Talk with your doctors and healthcare providers. Often, it is difficult to think on the spot when you’re learning about the diagnosis and your options, so don’t be afraid to ask your doctor to repeat information to ensure you understand it or ask additional questions. Ensure you have someone in your support network attend appointments with you, so they can provide support and help ask questions and gather information.
This is an overwhelming and emotionally fraught process, and you want to make sure you have all of the information you need to make the best decision for your child. Don’t be afraid to ask for what you need— another appointment to discuss your questions, more testing, an additional ultrasound, a consult with a specialist, whatever you need to feel like all of your questions have been addressed.

Connect With Community

Reach out to those in the Trisomy 18 community to learn about their experiences. Our private Facebook group allows you to connect with those who have been in your shoes and know what your journey is like. Talk to them about their experiences. Don’t be afraid to ask the hard questions. Their experiences can be invaluable for helping you understand your options. And the support of a community of parents who have been through this same journey can provide an irreplaceable resource for you throughout your experience.

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You’re faced with impossible choices. It is unfair and gut-wrenching. But whatever choice you make, your decision is made out of love for your child. And that will make it the right one.

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