Episode 16: Miracles are Messy
Reign Victoria
Born at 26 weeks and 5 days weighing 849g at birth (1 lb, 15 oz). She was hospitalized in the NICU for 80 days.
In this episode, we are talking with Ebony. She had experienced 4 losses (including losing a set of 22-week twin boys from twin to twin transfusion syndrome). After so many losses, Ebony and her husband tried to convince themselves that they were done trying to get pregnant. They began looking into adoption and set up a meeting with an adoption lawyer when Ebony unexpectedly realized she was pregnant.
At the beginning of her pregnancy, Ebony had minimal symptoms, felt great, and had a doting husband who wouldn't let her exert herself. She was followed by a high-risk practice given her history of prior losses. She had some mild swelling and elevation of her blood pressure before leaving on a trip, only to have a rapid worsening of her symptoms over the course of the next 48hrs. Ebony developed Pre-eclampsia and HELLP syndrome, ultimately going into liver and renal failure, requiring intubation and an ICU stay after delivering her daughter.
Ebony delivered Reign at 26 weeks and 5 days, weighing 1 lb, 15 oz. Because of how sick mom was at the time of delivery, she didn’t have the chance to get the standard doses of steroids before delivery to help Reign’s lung development. Reign had multiple respiratory complications during the first 2 weeks of life. She was in the NICU for 80 days and was discharged home at 38 weeks corrected gestational age, feeding well and not requiring any oxygen or medications at the time of discharge.
Getting snuggles in the NICU.
Ebony had every symptom of Pre-Eclampsia and HELLP, yet there was a delay in recognizing it. During this podcast, we talk about Ebony’s work with the March of Dimes and the #It’sNotFine Campain. Despite it being the year 2020 Black, American Indian, and Alaska Native women are two to three times more likely to die from pregnancy-related causes than white women (CDC, 2019).
I’ll be honest. This is a hard conversation. It is an uncomfortable conversation. But it is a conversation that we have got to have. It is simply Not Ok. We need to do better. We MUST do better. And here are a few ways to get moving in the right direction:
Slow down and listen. Ignore pre-conceived notions. Do not make clinical assumptions before you have really listened to the patient. When health care providers really listen to patients, they find the information they need to provide good care.
Patients need to educate themselves prior to showing up to a hospital or clinic. Know your symptoms, do a little research when you can, and come armed with information to advocate for yourselves.
It is unfortunate that black women almost have to become the stereotype of the aggressive woman they are unfairly portrayed as in order to get the health care system to listen to them.
Taking Reign home from the NICU was only the beginning of her health journey. During the first year at home, Reign got RSV, developed pulmonary cyanotic heart disease, and was diagnosed with pulmonary fibromas two days after her first birthday. She ended up on oxygen at home and continues to undergo therapy for her pulmonary fibromas. You can follow her story and progress on Instagram @andsheshallReign and through their website.