Pulling The Rug- Can it go gently?Tristen Dinkel, BSN, RN, CPN, CNRN Jul 20, 2021
39 weeks of a pregnancy in which we were riding the rollercoaster of will she or won’t she... survive. Is she big enough? Did she grow enough lung tissue?Is there too much fluid? The rollercoaster ride took its final drop when I got the call just days before delivery that they have a genetic diagnosis, and we need to come in the office. My husband was at work. As we had been told of all the possibilities from the 20-week mark, I thought was strong enough to hear whatever they could tell me that day on my own. .So I picked up my rug and trekked into my doctor's office.
Like all young, first time parents, we expected a healthy pregnancy. We had made it to the part where we finally got to find out if it was a boy or girl and that was all we were focused on during the ultrasound. We didn’t notice the tech holding her breath and working quickly to measure all the shortened limbs of the baby growing inside of me. We didn’t notice the room growing cold around us as we waited for results no parent should have to hear. Instead, we were making bets on pink or blue and texting grandparents that there was a healthy heartbeat as the doctor slowly walked in the room with a look on her face. You know the one that tells you to put down your phone and stop sending out happy texts. That look that tells you happy texts are not in your future for a long time.
She quickly began to tell us that the baby, our baby girl, had many concerning features that put her at risk of being compatible with life. She had a severe form of dwarfism, not typically seen this early in pregnancy and if she didn’t grow enough during pregnancy, she would not have enough room in her body for lung tissue to breathe after birth. Our world was rocked, the rug felt like it had been pulled out from beneath us, just as all patients feel when they receive tough news they weren’t expecting.
We choose to continue our pregnancy and utilize prenatal palliative care to walk alongside us preparing for the worst but hoping for the best outcome. We choose to celebrate little milestones and utilize our short time together as a family to make memories and get to know each other. We grieved and rejoiced along our walk with our pregnancy and shared the journey with our loved ones. Palliative care guided our journey helping us prepare for her arrival, both emotionally for what might come and how to physically make use of our time together. In the end- walking into the office, I recognized the look on my provider's face again. One that revealed she was hoping, just as much as I was, for a better diagnosis than the one in her inbox. The specialist had reviewed the scans and confirmed that our baby had a lethal form of skeletal dysplasia and would not survive long after birth. No matter how gently she tried to pull the rug out from under me, no matter how many weeks we had to process the possibility of tough news, it stung.
When you move a rug- the objects on top move. But when you try yanking it quickly- there is the chance that everything on top topples and falls. But if you take your time and slowly roll the rug, gently moving the items from the rug and replacing them where they go- they still move and change locations, but you have taken the time to keep them from falling. As with giving patients tough diagnoses, our goal as palliative care providers is to keep our patients and families from emotionally falling. Taking the time to sit with them and sometimes getting on our hands and knees to help them roll up their rugs, moving the items one by one so they can walk through the tough news without toppling their entire world. My palliative care team gave me precious time with my daughter alive in my arms, grieved with me when she was gone, and sat with me on my rug when I needed their support. May we all gently help move the rugs for others so we can join them where they need our support in their journeys.