At Carrying To Term, we highly value the expertise, innovation, and passion of medical professionals. In our work, we have come across incredible doctors, nurses, midwives, social workers, chaplains, and therapists who are constantly striving to improve the standard of care received by parents facing a terminal prenatal diagnosis. Your passion and drive inspire us, and we are here to offer our insight, resources, and support to help you as you care for these families.
The entire team behind Carrying To Term is comprised of people who know firsthand the power that medical professionals have to change the way we feel informed and empowered as parents facing the loss of our child or children. Each one of us has our own unique experience with medical professionals, and we are building Carrying To Term not only as a way to honor our babies and all the other babies lost but also as a way to honor the medical professionals who stepped in and treated us like parents grieving an unimaginable loss.
We know that innovation is often built on the foundation of personal experience and suffering, and we believe that, with your help, we can create change that improves the standard of care for all the parents who will also walk this path. Recently, the topic of terminal prenatal diagnoses has become more visible as parents have begun to publicly share their stories. Each time a parent shares their story, other families feel less alone, and medical professionals are given an opportunity to learn from that family's experience.
These stories should inspire those of us who step in and provide care to similar families because we should always be striving for a world in which no parent falls through the cracks or receives less than exceptional care. Every parent who receives the news that their baby has a diagnosis incompatible with life should receive a standard of care that accounts not only for their medical needs but also for their emotional and logistical needs.
We believe this exceptional standard of care starts at the moment of diagnosis. The way a parent hears this news affects how informed, empowered, and supported they feel in their ability to make the decisions that are right for their family. At Carrying To Term, we advocate strongly for a non-directive approach that includes presenting parents with the option to carry to term and the assurance that they will have support if they choose to do so. No family should feel as though they only have one option. No family should feel as though they will be alone if they choose to carry to term.
To help you provide a supportive and non-directive approach to presenting a diagnosis, we offer brochures for you to give to your patients. Our brochures let your patients know that you are informed and up-to-date on the resources available to them and that you support them if they choose to continue their pregnancy. For more information about our brochures, read our post found here. To request a bundle of brochures be mailed to your practice, please fill out the form found here.
As medical professionals delivering the news of a terminal prenatal diagnosis, you are the ones who determine whether or not a family feels fully informed and supported. We acknowledge the heavy weight of that responsibility, and we know that you cannot bear it alone. The exceptional standard of care that we are calling you to requires that you feel supported and cared for. It is not an easy job to provide ongoing care to a family in the middle of life-changing grief, and that is why we want to come alongside you. We are here to help shoulder the burden of caring for the emotional needs of your patients.
One of the ways we hope to support you in your role as a medical professional is by listening and learning from you. We want to know the aspects of caring for these families that is difficult for you. We want to know where you see current practices succeeding and where they could be improved. We want to know the reasons behind why you do the work you do, and what makes you so good at your job. We also want to know any hesitations that make it difficult for you to step in and walk with a family as they carry to term.
We ask these questions not because we want to tell you how to do your job. We ask these questions because we believe in the work you do, and we believe that no change can happen if we do not address the hard parts of being the medical professionals providing care. Carrying To Term is built on the values of education, compassion, community, and support, and those values do not only apply to the families who seek our support. They were chosen with each of you in mind as well.
We do not ask our families to walk this journey alone. In fact, most of you have likely asked about the support network that your patients have. You know that having the support of family and friends can help your patients process information, reduce stress, and even adhere to medical recommendations. We know that social support networks help parents navigate the carrying to term journey and manage their grief. Parents benefit tremendously from finding connection with other parents who have faced the loss of their child because people cannot fully understand what they have not experienced for themselves.
In the same way that parents benefit from social support, we believe that you also benefit from social support. Whether that support is coming from the interdisciplinary team caring for a particular family or from close colleagues in your field, you are benefitting from that support, knowledge, and community. Carrying To Term operates with that support and community in mind. We strive to be a place where you can seek support, connection, information, and specific resources as you care for families with terminal prenatal diagnoses.
Speaking from my own experience, I watched our medical professionals be affected by our losses. Their experience of my losses changed the way I view medical professionals, and it instilled in me a passion for caring for them and for you. I can imagine the difficulty that exists in walking the line between professional distance and your experience of what is happening. I can imagine that it is difficult to know how to step in without falling to one extreme or the other: burn-out or desensitization. You may not struggle with this in each case, but I am sure there is at least one case that stands out in your mind as the one that affected you deeply or made you question why you continue to do this hard work.
It is in those moments that we want you to know we are here to partner with you. Let us help you by sharing tools and insights created for you as medical professionals as well as by providing resources and support specifically designed for your patients. We believe that helping your patients helps you and that supporting you supports your patients.
Currently, Carrying To Term offers support for your patients through:
- a personal advocate
- an online birth plan tool
- resources for gathering a care team
- a list of helpful questions
- videos to help them understand their journey
- information on neonatal donation
- personal stories from other parents
- evidence-based scientific studies
- a blog with content to help them navigate pregnancy, delivery, and loss
Those resources also provide insight and serve as helpful tools for you as well. By providing your patients with this support and information, you are allowing us to partner with you in their care. Our blog has an entire section of content written specifically for you as medical professionals. We address topics ranging from considerations for prenatal care, communication with parents, and even your self-care.
We believe these resources are just the beginning. With your expertise, innovation, and passion, and our personal experience, vision, and commitment, we have the opportunity to change the way parents experience the continuation of a pregnancy despite a terminal diagnosis. We have the chance to give them information to help them make gut-wrenching decisions, the gift of presence in their limited time, and support as they navigate grief and loss. We have the ability to make emotional considerations an integral part of providing care to these families.
You may be wondering how to start this process. Simply put, it begins by you learning about us and utilizing the resources we offer. Then, we want to know what you need. What resources can we create and provide for you and your patients? What can you teach us? What can Carrying To Term, an organization of passionate and experienced parents, teach you?
Changing the standard of care is a collaborative process. It requires us both to learn from one another. In order to fold emotional and logistical considerations into the existing framework of care, we need your input. You are the frontlines, and we are your support. Let us help you help your patients. Teach us so we can teach you.
To connect with us and share your insights, please reach out to Sarah Garvey, our Director of Advocacy and Bereavement Services. You can contact her directly by filling out the form found here.