The life-changing news that a baby has a diagnosis incompatible with life is overwhelming and devastating for the parents. After hearing the news of such a diagnosis, many parents struggle to process any further information given to them. Listening to doctors explain what is happening to their baby and realizing that there is nothing they can do to fix it can be all-consuming.
In those moments, it can be impossible to make a well-informed and fully thought-out decision regarding the future of their pregnancy. These parents need time and space to consider all of their options and then make the decision that is right for their family.
When facing such an unexpected and life-altering tragedy, it is not uncommon for parents to look to the experts- their medical professionals- for answers about what to do next. As the professional, it is vital that you provide them with their options without judgment or being directive. You do not have to agree with the decision they make, but it is crucial that you do not inadvertently let your bias or preference influence your patient.
A Duke University study reported that “although non-directive counseling is widely supported following prenatal diagnosis of serious fetal anomalies, health care providers often counsel in favor of pregnancy termination, especially in the case of lethal anomalies.” To complicate the issue further, the study also reported that even when this non-directive style of counseling is in fact used, medical professionals are still failing to provide comprehensive information about continuation of pregnancy.
The study put a statistic to it, stating that only 37% of genetic counselors involved in the study even discussed continuation of pregnancy as an option. In order for parents to make a fully informed choice, they must be presented with all of their options in a way that accounts for the risks and benefits of each choice. This includes the emotional and psychological risks and benefits, not just the physical ones.
As the medical professional, it is your job to present continuation of pregnancy as an option for these families. By presenting their option to carry to term in a non-directive manner, you are empowering them to make the right decision for their family and letting them know that you will support their choice. The most powerful thing you can do for a family in the wake of a terminal prenatal diagnosis is be present and supportive in their journey.
Walking alongside and providing care to parents who choose to continue their pregnancy is not an easy part of your job which is why Carrying To Term is dedicated to helping you as you support your patients. We will help both you and your patient navigate the emotionally challenging aspects of this process. We provide education and personal support to you as the medical professional, and we provide support, resources, and tools to your patient to help them make the most of the time they will have with their baby.
As medical professionals, we want you to feel informed, equipped, and empowered to navigate a terminal prenatal diagnosis with your patient before you even deliver the news, and from the moment of diagnosis, we want your patients to feel empowered, informed, and supported. We believe that our brochures are a tool to do just that. These brochures were designed to help you provide a standard of care that takes into consideration the emotional needs of your patient and to provide your patients with a clear idea of the resources Carrying To Term has curated specifically for them.
When delivering the news of a terminal prenatal diagnosis, we want you to provide your patient with our brochure. Not only does it tell your patient that there is a supportive and understanding community available to them, it also tells your patient that you support them and any decision they make. You are letting them know that you are up-to-date on the resources available to them, and that you care enough to ensure that they have every tool they might need.
On the brochure, they will see that we offer:
- A guide to gathering their care team
- A list of questions to ask
- A tool to create their birth plan
- A personal advocate throughout their journey
- Studies on carrying to term
- Real stories
By providing your patients with our brochure, you are allowing us to partner with you in providing an exceptional standard of care to your patient. Neither you nor your patient have to experience this process alone. It is our mission to support parents facing a terminal prenatal diagnosis and to support the medical professionals like you who care for these patients.
To request a bundle of brochures, please fill out our contact form found here.