Parents are rarely prepared to receive the news that their baby has a life-limiting condition. As a result, they depend on their doctors and medical professionals to be informed and present every available option in a supportive and non-directive manner. Parents expect their doctors to be competent, unbiased, and personal, so it makes sense that parents facing a prenatal diagnosis of a life-limiting condition would look to their doctors for answers on what to do next.
Following such a diagnosis, parents are painfully aware that there is no positive outcome. The picture they had for their pregnancy and the future of their family has been irrevocably changed, and they know that they are facing the death of their child. There is no easy decision to be made because there is no decision that gets them the outcome they wish for. As a result, they are left to discern which of two very difficult and painful decisions is the best one possible for their family.
Depending on when a life-limiting condition is discovered, there may be a clock placed on a family's decision-making, and that can lead to pressure, stress, and a lack of clarity for parents. As a doctor, the best gift you can give to these families, regardless of when the diagnosis is discovered, is support and information. Psychologically speaking, parents fare the best when they are fully informed and equipped to make the right decision for their family. These parents need to understand the realities and full weight of what it means to have a termination and what it means to choose to continue the pregnancy. No parent should enter into either decision lacking knowledge and clarity.
At Carrying To Term, we seek to support both you and your patient as these parents make the most painful decisions of their lives. We are a non-directive organization dedicated to providing support, resources, and tools to help parents navigate the continuation of a pregnancy, if they choose to do so. We believe that choosing to continue a pregnancy despite a life-limiting diagnosis is a viable choice that allows parents time to prepare, make memories, and grieve.
To these parents, their baby and the diagnosis limiting their baby's life is more than a medical case to be treated or set of statistics to be understood. From the moment of diagnosis, they are parents grieving a very loved and wanted baby. Treating each baby and each parent's grief as wholly unique is every bit as important as providing parents with all the information they need to feel fully informed. They are looking to you, their doctors, to acknowledge and validate the heartbroken part of them before meeting their need for information. You can do that by communicating with your patients in a clear, sensitive, people-first way that makes them feel seen and heard. Then, you can support and empower the parents by presenting them with all of their options in a non-directive manner.
We acknowledge that not every medical professional views the continuation of a pregnancy as a viable or mentally healthy option for these parents, but we believe medical professionals have an obligation to present a parent's options without bias. By putting your personal feelings aside and entering into diagnosis presentation and follow-up counseling with empathy, you are telling these parents that they are supported in their choice. As the expert in the room, never underestimate the power your permission has for these families. When you present continuation of the pregnancy as an option complete with support, resources, and tools, you are letting them know that they are not alone if they choose to walk this path.
We are here to help you do exactly that. We do not expect you to be up-to-date on every resource available to families who continue their pregnancy. Our whole mission is to be the resource for your patients and for you, so that you can focus on doing what you do best: providing exceptional medical care to your patients. We do not believe in letting parents enter into this decision blindly. Rather, we offer a variety of resources to protect them from doing just that.
On our site, you and your patients will find:
- Scientific, evidence-based studies focused on the physical and mental health of the parents and the baby
- Videos to help parents understand the carrying to term journey
- Information on gathering a care team
- A list of questions to ask their doctors
- An interactive birth plan tool to help parents outline their wishes for the limited time with their baby
- Information on neonatal donation for transplant and research
- A personal advocate to walk parents and medical professionals through each step of this process
- Personal stories from other parents who continued their pregnancy despite a diagnosis
- A comprehensive blog dedicated to supporting these parents and shedding light on the realities of this experience
As you can see, our mission is not to sugarcoat the carrying to term process and experience. Rather, we seek to fully inform and equip parents in their decision. We provide a unique and comprehensive set of resources dedicated to supporting an underrepresented choice. It is our hope that by working together with medical professionals like you, no parent will ever feel like they are alone or have no choice following a devastating diagnosis.
When you walk into a room to present a diagnosis or counsel a family about their options, we want you to feel equipped and confident in your ability to meet each individual family's unique needs. We want every single one of your patients to leave the appointment feeling supported, heard, and fully confident in you as their doctor. You have a powerful influence in these parents' lives, and the way you counsel and support them has life-long impact.
We know you cannot meet every need of every grieving parent alone, and for parents who choose to continue a pregnancy, their needs are many and ever-evolving each step of the way. For this reason, and because of the utmost respect we have for what you do day in, day out, we are here to come alongside you as you support your patients. We hope you will let us by utilizing our resources and by providing your patient with our information, so they know there is a whole organization dedicated to their journey.
To help you inform and empower your patients, we offer brochures for use in your practice. Our brochures are designed to be presented to your patient following diagnosis. They provide a quick and easy-to-read overview of who we are and what we offer to them at each step along the way. For more information about our brochures, please read our post found here. To order a bundle of our brochures, please fill out the form found here.