After a loss, change in healthcare is possible.
According to the CDC, in America, roughly 1.1 million pregnancies end in miscarriage and about 25,000 result in stillbirth per year. That’s 1 in 4 pregnancies ending in miscarriage and 1 in 160 babies stillborn. The numbers are staggering and the trauma of these losses is forever woven into the lives that are touched. After the physical wounds have healed, the pain and despair are suffered in silence. From the outside, people who have lost a baby can appear as though they are healed and whole, but I assure you we are not. From my own experience and having heard from hundreds of others (one account linked here) who have experienced this sort of loss, we are treated as though we are “fine” once these losses, though tragic, are behind us. Oftentimes, we get the message that it’s time for us to focus on the future and although “these things just happen,” we’re supposed to just be thankful for what we have, look forward to another pregnancy, or focus on the fact that we already have living children. This often sends the message that our pain, anxiety and depression are not valid, that perhaps we are overreacting as parents. Perhaps others are under-reacting.
The fact is that 60-80% who have experienced the loss of a child at any gestation will become pregnant again within 30 months of their loss – and the trauma of the loss NEVER leaves us. It’s woven into our bodies and our outlook on life. It overshadows the beautiful moments and it can leave us only seeing black and white in moments that should be drenched in vibrant color. These experiences are tethered to us whether we want them to be or not. Getting pregnant again isn't the solution; it's just the beginning.
Pregnancy after loss is the beginning of families holding their breath for nine long months; if they are lucky. If they are lucky, they will have supportive communities who do not expect this new pregnancy to negate the experience of their last or the ones that came before. If the families are lucky, they will have prenatal care that takes their history of loss into account at every single exam, as they desperately do all they can to bring this baby into the world and to not let history repeat itself. They will have confidence knowing their healthcare team is doing absolutely everything they can to get this baby here safely. There will be a change in care from their loss, offering a bit of hope that this pregnancy will have a different ending. They will never have to hear “let’s wait and see” or “sometimes these things just happen.” A very blasé statement in relation to death but a statement, nonetheless that is spoken far too frequently when a baby dies.
Instead, the pregnant person will hear “Let’s do all that we can to try to make sure that this doesn’t happen to you again.” This simple statement isn’t saying that loss won’t touch them again, it’s stating that this person has support from a provider who validates their experience. At the beginning of an appointment, the person will not be forced to rehash their previous loss(es) because the medical team has already taken the time to review their charts. The provider starts appointments with something like, “I reviewed your medical history and see you have endured a lot. I want you to know that I will take care of you clinically, but how can I help make today a little easier for you in this appointment?” The patient won’t be made to feel flawed for being terrified of history repeating itself. The patient will feel empowered to ask for what they need. The conversation between provider and patient will be just that, a dialogue filled with support, collectively making informed decisions that is best for that family, after all, anxiety and depression do not disappear with the pregnancy and birth of a living child. Not mentioning the elephant in the room doesn’t make the elephant in the room disappear, it only allows it to take up more space, leaving less room for all the other feelings, including hope.
This type of care doesn’t cost more. It doesn’t require new legislation, or better health care coverage. This type of care is possible now. It’s possible with some small changes to the care that is already being given. It’s changing the way that pregnancy loss is viewed in the healthcare space. Miscarriage may be common to the provider because their career consists of caring for pregnant people, but I can assure you that it’s not common to those of us who have experienced it. Stillbirth may rarely happen under the supervision of that one provider and yet it happens one in every 160 pregnancies, 1 in 96 if you’re a Black person. From my non-healthcare perspective, 1in 160 and 1in 96 seem like really horrible odds. If the stats are true, and 60-80% of people get pregnant again within 30 months, then this type of compassionate care is necessary.
Let me help. Tethered Care Consulting rose from the ashes of my daughter, Reese’s death. Reese was stillborn 16 hours before her scheduled delivery. Her death was a tragedy, her legacy is not. After her death, I experienced the well-intended yet horribly insulting comments and care in my subsequent pregnancies. I worked tirelessly to help clinical staff acknowledge the trauma that surrounded Reese’s death and ultimately stripped the joy right out of the pregnancies of her little siblings. The anxiety that surrounded every moment of pregnancy after loss was suffocating. Every single appointment, I found myself justifying the additional care that I required. I found a compassionate, humble OB who did a spectacular job weaving the clinical care and human experience into each and every appointment. I know this type of care is possible for everyone but what needs to happen first is an acknowledgment that empathy in care is lacking, that it can be better.
Through Tethered Care Consulting, I work with healthcare professionals to provide enhanced care to families who have experienced a loss. This work can take many different forms from a one-hour impact training, virtual or in-person, offering a series of small changes in approach that lead to big impacts to the care and satisfaction of patients (think reframing patient questions, modifying intake questionnaires, and visuals in waiting areas). I also offer custom training if clients have found an area of concern that needs improvement but don’t know how to get started (think increased bereavement services or training all staff on how to serve pregnancy loss survivors). This work can be a one-time session or a series of sessions, gradually building upon the last. I have shared these tools with offices of one and conference rooms of 200. It’s customizable and approachable. It enhances clinical care and adds a humanistic approach. One size does not fit all just as one baby does not negate another.
Speaking for every pregnancy loss person in the U.S, this work is desperately needed and I’d be honored to help.
Amanda Duffy is the founder of Tethered Care Consulting and a mother of four. Her daughter Reese was stillborn in 2014 at 39 weeks, a tragedy that changed the course of Amanda's life. Because of Reese, Amanda became a fierce advocate for reducing preventable stillbirths, supporting families who experience the loss of their baby at any gestation as a bereavement doula and state ambassador for Count the Kicks. Amanda also pushes the envelope when it comes to improving the care received for those entrenched in life during and after pregnancy loss. Amanda spends her free time as a shuttle driver for her thee living children from one activity to the next and enjoys watching a good post-bedtime true-crime documentary with her husband.