Glo Preemies - Supporting Black NICU families throughout their life
Ashley Randolph
Founder of Glo Preemies, and mother of 3 NICU babies
The lengthy, complicated history of Black women's bodies being abused, neglected, and controlled is only one chapter in the country's Black maternal mortality epidemic. The CDC estimates that Black women in the US have an approximately threefold higher risk of dying during childbirth than do White women. Due to a relative shortage of clinicians, hospitals closing, and a dearth of postpartum care, the United States was placed last among all industrialized nations in a Commonwealth Fund study for its capacity to deliver high-quality maternity care. The probability of pregnancy and childbirth-related death is equivalent among Black women [in America] and women living in nations with much less established healthcare systems, such as Nigeria; and America is where my organization focuses solely on the experiences of Black women.
I am the mother of 3 children born premature. I came from an accomplished family but in my Senior year of college in 2010, in New Orleans, Louisiana, I found myself pregnant, suffering from severe Hyperemesis Gravidarum (HG), and unenrolled from college, across the USA from any close relatives or friends. I had to drop out of both prestigious colleges I was attending at the same time as they did not have family housing. To feed myself I applied for food stamps and was told that I either had to not be in school or choose to not feed my baby. I chose to feed my growing baby in my stomach. I was two semesters away from graduating with my bachelors in Biology and Public health with a minor in Chemistry and the goals of becoming an OB/GYN and working for the World Health Organization (WHO).
At 5 months pregnant I started taking blood draws for my pregnancy. The doctor called and told me that my lab results showed that my child will be born with abnormalities and I should have a late term abortion because I can’t go to school to be a doctor with a sick child. I was determined to have my child. A few weeks later I began having preterm contractions.
I moved back to California at 32 weeks gestation and had my son, Aiden, 2 weeks later. He had to stay in the NICU for 3 weeks with jaundice. [Aiden has since been diagnosed with] mild ADHD, and vision problems which he wears glasses for now.
I had my second child, London, 4 years later while living in Houston, Texas. Once again, I suffered from severe HG and was constantly hospitalized. I researched and advocated for the progesterone shot to help with preterm contraction at 4 ½ months. My doctor filled out the request and within two weeks I was denied the progesterone shot from Medicaid even though I checked every box on the questionnaire form. I had to move back home to California again, and received the shot a week after my arrival. I had my daughter at 34 weeks gestation. Aiden and London both had 2 week stays in the NICU.
One year later, I became pregnant once again after moving back to Houston, Texas. I suffered the same severe HG. At 6 weeks pregnant, before the nausea became unbearable, I drove from Houston to Sacramento, Ca with my 2 small children and applied for medical care the next day. I was let go from the doctor at 4 months, in the receptionist area, and Medi-Cal couldn't find me a replacement doctor; so I was then seen by an ultrasound technician weekly until delivery at 36 weeks. I had a meltdown in my grandmother’s backyard at 35 weeks because; I had horrible thoughts that my baby had passed, and my body was just carrying a [dead] baby since I passed 34 weeks which was not normal for me, and I was not seeing a doctor. While I was shedding tears, my husband rubbed my back and reminded me that a normal pregnancy lasts 40 weeks and that he was happy I passed 34 weeks. Jamie She was born at 36 weeks. She was my smallest baby and was in the hospital for 3 weeks until she reached 5 lbs.
I lost 30 pounds with each pregnancy. I lost my family support and they have never fully understood what I went through with severe morning sickness and the NICU stays. I was never educated on the NICU or for premature birth. I was never given anything to take home from the NICU from all 3 experiences. I have been a victim of having CPS ask me questions about why my baby was born premature even though the doctor said I was healthy and it was just something my body does during my second NICU journey.
It was a very dark time in my past, and I created GLO Preemies in 2014 so that no other black families will feel alone. I know what it feels like to be black, pregnant, and shamed. From those experiences I got a tubal ligation after my 3rd child so that I would never feel helpless in the arms of the healthcare system. I now have a non-profit, that is now global, and stays with black families until the child turns 18 years old, and a podcast to help spread the Black voice.
My first book is called Black, Pregnant, and Shamed. It talks about my 3 pregnancies and NICU stories, and how we as black women often felt guilty by our jobs, our family, our healthcare system for having a premature child. It is well known that the mainstream media frequently disrespects and misrepresents Black women. Too often, pictures of [Black] women who are combative, loudmouthed, and pointing fingers at men, have been gleefully shown. If a Black NICU mother speaks out or expresses an opinion, she risks being labeled as "mouthing off at the doctor," or as "the stereotypical loud mouth, confrontational Black woman," who was somehow at blame. These "blame the victim" remarks are frequently made by experts who are meant to be there to assist. The truth is that criticizing or challenging a healthcare provider is not illegal. Especially when the professional is the one acting in an inappropriate manner.
“Too often, pictures of [Black] women who are combative, loudmouthed, and pointing fingers at men, have been gleefully shown.”
Some of the most prevalent stereotypes of black NICU mothers include the ideas that we didn't intend to have children, that they were accidentally created, that we don't love them in the same way that other mothers do, that we don't care about raising them in the same way that other mothers do, and that we can't afford to care for them. And dealing with that when you're simply trying to get to the NICU to take care of your baby may be incredibly difficult. There is always the worry that someone will pass a serious judgment on your parenting abilities, your children, or you as a mother, father, or other family member.
Yes, racism is present in policymaking, I can confirm as a leader who contributes to policy making. The Code of Federal Regulations should no longer include disparate-impact analysis, which emphasizes policy results rather than their intentions. Congress should also state clearly that it intends for anti-discrimination laws to prohibit intentional discrimination, not racially neutral policies that have different effects on groups based on behavioral differences. Inclusion of race should be prohibited in employment and contracting with the government. Additionally, there should be a national or state mandate for racial healthcare equity training.
The Black Maternal Health Momnibus Act of 2021 suggests audacious ideas that together will effectively solve the maternal health issue. The "Momnibus" would include a range of topics that affect maternal health, including childcare, housing, transportation, and nutrition. The Maternal Health Quality Improvement Act would also enhance maternal health by funding data gathering, provider training, and quality improvement. Through advocacy, the government has the chance to do more than just what it is already doing to better the lives of all patients. Because it is past time for our government to speak up for those who are unable to do so. We need officials to show up and be loud for our Black NICU moms. We need the government to see women as equal human beings and not let laws like Roe vs. Wade be overturned and take the rights away from the women who birth these same lawmakers.
At some point in our lives, we decide to be judges. We decide for ourselves what we view as right or wrong. We decide what we view as acceptable. We are all our own judge. This is also often called "discernment". I am a mother of 3 premature infants in 3 different states, with all different horrible experiences, and now writing as a national advocate for premature births and the 18 years after. Today, I stand in solidarity with other families to give my views on what Equitable Care is in the NICU. When do we decide what is normal and equitable in the NICU for minority families? Today, minorities are taking the role of a judge and voicing our concerns loudly.
I have talked to over 1,000 women who have all told me they did not receive any resources or supplies when being discharged from the NICU nationwide. All of these families had different ethnicities, and some had different experiences with different births from the same hospital. This is the first step to create equitable change. I have had 3 premature infants and I have never taken home supplies and resources. I am one of the thousands of women who need the healthcare system to listen to our voices. We are judging how we are being treated. We are standing for what is right and we hope that you stand with us. We need a standard guideline for what every family should get when heading home as a complete unit for the first time. Some families receive numerous packs of diapers, wipes, and pacifiers. Some are even offered formulas before they leave. Most are not offered anything upon discharge except anything that has already been open.
At GLO Preemies who have created guidelines for each family, just as there are guidelines for when the baby can be discharged.
The marginalization of Black women's contributions to midwifery and the subsequent disregard for prenatal and postpartum care for Black women are two sides of the same coin; they are signs of systemic racism, which still exists today and greatly contributes to the senseless, avoidable deaths of mothers.
Midwives were the main providers of reproductive health care throughout colonial times. Indigenous people have traditionally practiced midwifery in North America; while those of African origin, who were enslaved, introduced more traditional midwifery methods to the country. Until the early 1800s, when the medical specialty of obstetrics started to take shape, and white male physicians started to perceive midwives as competition and threats to their status and financial success, these midwives consistently provided safe and affordable care to pregnant people in their communities. Racist stereotypes that painted black midwives as ignorant, negligent, lazy, inept, dirty, and dangerous came forth as a result of this perceived threat. Due to this, I am a fervent advocate for the use of doulas and midwives.
According to estimates, around 600,000 women in the US will experience some form of depression during their pregnancy. This is significantly higher when other mental health conditions are included. Other mental health problems such as substance abuse and trauma can also contribute to miscarriages and stillbirths. One of the most common complications that women experience during childbirth and pregnancy is postpartum depression. It affects around 1 in 7 women in the US. In other words, around 10% of pregnant women, and 13% of those who have just given birth, experience mental health issues. This issue is considered a global health challenge.
Compared to white women, African-American women are more prone to experiencing perinatal mood disorders. They are also less likely to seek treatment due to various factors, such as financial and social barriers. Black women are additionally more susceptible to experiencing health disadvantages due to their interactions with various factors such as class, race, and gender.
Post-traumatic stress disorder and anxiety disorders are common among parents of infants in the NICU. Black mothers are also more prone to experiencing these conditions than white mothers, and preterm births are more common among them. Most importantly, yes, support groups should include black mothers’ racial disparities when discussing trauma. So many families don’t feel that they can speak on what happened for fear of the reaction. Most Black families that I speak with feel a weight has been lifted when we come together and discuss trauma and any racial disparities that they endured. I believe that most support groups are not doing it now because of multiple reasons including funding issues, they are not black themselves and can’t address or relate to the black families, or they are themselves a part of the problem because they don’t see that racism exists.
https://www.cdc.gov/mmwr/volumes/68/wr/mm6835a3.htm
Statistics show that if people had been born white, there would be more people [who survived childbirth]. The World Health Organization's primary data on maternal mortality show that women in sub-Saharan Africa have the highest maternal mortality rate in the world, at 533 per 100,000 live births, or 200,000 each year. About two thirds of all maternal deaths globally occur in this area.
It can be lonely and isolating to lose a child. The biggest aid, according to parents, was someone simply being there for them. Someone who is concerned, and inquires about the pregnancy, the baby, and their needs. One parent may be eager to communicate while the other is either not quite ready or never wants to. Instead of viewing them as a unit, try to assist each parent separately and in a way that works for them.
This also applies to any siblings who might want your assistance. Ask the parents if they would want to discuss if you are unsure, and pay attention to their responses. If you are aware that they are not prepared, express your sorrow and then go on.
Some remarks may not be helpful. Sayings like "You'll have another baby,” “Did you go to your doctor appointments,” “Did you take Vitamins,” or "Everything occurs for a reason," for instance, may have the best of intentions yet come out as heartless. There is no justification for any parent to have to deal with the death of a baby since children cannot be replaced.
Most individuals have experienced sadness and lost loved ones. But losing a kid is special. If you haven't experienced it, it might be difficult to understand how it feels. It's OK to acknowledge that you are unable to relate to someone's situation but that you are there to help if necessary.
Remember who you are. This is a step that most adults forget. Life is going to happen and you can't change that. In the midst of chaos remember "you". control the day and time by making a dedicated plan for the next day. Don't let the day get ahead of you - get ahead of the day. You are allowed to give yourself self-care time. We are given 24 hours a DAY. You are allowed to have 15 minutes of self-care time without guilt. If needed, add it to your daily plan.
-Ashley Randolph