The doctor came into the room to discuss the scans that had been done earlier that same day. He introduced himself to us, sat down, and began to go over everything. When he looked up, we made eye contact, and he took a deep breath and sighed. He asked if is this was a desired pregnancy. My husband and I both nodded and firmly said, “Yes.” Immediately after that word came out of our mouths, he continued with “…because if this isn’t desired, we can terminate the pregnancy. The scans I see before me tell me this is going to be a very difficult pregnancy and life for you both. This isn’t going to be easy.” I was speechless.
At 20 weeks along, I was being asked if I wanted to terminate my pregnancy due to abnormalities shown on the scans. Halfway through my pregnancy, I was sitting in a dark room with a doctor who was at the top of his field telling me I was told my son was going to come early and was going to be medically complex. I sat there confused and petrified, processing what I had just heard.
At 24 weeks, my son was the size of a 20-weeker. He was weighing less than a pound. It was during this appointment that our doctor (the specialist) looked at us and said if Mark were to be born at his current weight, they would not be able to intervene in any way. There would be no life-sustaining measures available to him, no intervention, nothing. If I were to deliver at that moment, even at a hospital as great as Wolfson Children’s Hospital, he would be left to die. During this appointment, my son weighed 250 grams (approximately 9 ounces). According to the doctor, he had to reach 500 grams (approximately 17 ounces or 1 pound 1 ounce) before they could do anything for him. On September 7, 2018, at 26 weeks and 6 days gestation, I went to my specialist for a “routine” visit when she told me that Mark had reached 540 grams! This was some of the best news I could’ve gotten. I enjoyed this newfound sense of hope, but that too was short-lived. I mentioned swelling on my legs and after my blood pressure check, it was determined I was in hypertensive crisis. That small glimpse of hope was gone as quickly as it had arrived. They immediately wheeled me down to labor and delivery where I was placed on bed rest. I wasn’t going home until I delivered my son. My body could not manage to keep him safe anymore. My body was failing him. It was also failing me. At 27 weeks and 4 days, we welcomed our son on September 12, 2018, via emergency C-section. He was 1 pound, 7 ounces, and 12 and a half inches at birth. I watched as my preemie was whisked away to the NICU — his new home for the first 115 days of his life. I went back to my room for recovery where I was on bed rest once again. I was left with a new diagnosis of HELPP Syndrome, and I was placed on MAG once again. I wasn’t able to see my child for the first 36 hours of his life. I couldn’t hold him for the first 38 days of his life. I didn’t get to see my son in a onesie until he was over 2 months old. I was denied every privilege that almost every other mother is granted. Prematurity leaves scars.
Every year, approximately 15 million babies are born prematurely, making up 10% of all pregnancies worldwide. In 2018, I gave birth to my son who reluctantly became part of that exclusive club and I joined the group of mothers who have scars — either on their bodies, on their hearts, or on their minds. The March of Dimes leads the charge in raising funds for research in order to protect mothers and babies from preventable causes of preterm labor. However, there are many other underlying and unspoken causes of preterm labor. This means there are hundreds, if not thousands, and millions of other women just like me. We do everything by the book, we go to our appointments, take our vitamins, and eat more spinach. Sure, we give in to the strange cravings of pregnancy on occasion, but for the most part, we follow the rules of pregnancy.
Still, with prematurity, I was left asking myself why. Why did this happen? How did this happen? Why wasn’t I strong enough to prevent my child from coming early? Why did my body fail me? Why did I fail my child? I questioned my worth as if somehow my worth is tied into my ability to deliver a full-term, healthy baby… or to even go through pregnancy at all. What scares me the most is that my story is similar to thousands of other women. Prematurity causes a great deal of stress for the family. Oftentimes, prematurity and the stress of the NICU causes an increased struggle for mothers to bond with their child, something crucial to a child’s healing. The financial burden leaves parents struggling to make ends meet because they choose to be at their child’s bedside rather than at work. Insurance only covers so much and families pray for a good social worker to help them access any and all available resources. A mother may feel isolated and less than. The mental health battle begins to take its toll. According to the March of Dimes, in 2007, the estimated total cost associated with preterm labor and prematurity was $26.2 billion and has only increased since then, despite research and program implementation efforts from doctors.
How You Can Help Premature Babies & NICU Families
So what can we do about this? How can we raise awareness? How can we be supportive? How can we help our NICU families? Well, there are a few ways.
1. Talk about prematurity! It isn’t taboo. It isn’t a secret. Chances are good you know someone who has experienced preterm labor or had a premature infant.
2. Wear purple. Throw in a purple bow and go back to the ’90s and throw on some purple eye shadow. Talk about a conversation starter.
3. Give back to your local NICU through programs like Mark’s Mission. NICUs are always looking for ways to promote family bonding in the NICU. Mark’s Mission is a program I created that does just that. Providing families with blankets, onesies, and board books allows for bonding and makes the stressful environment of the NICU more like home. It helps with promoting bonding, even in times of COVID-19.
4. Share this article. My story is one that I have chosen to share because it is one of many. It isn’t much different from others out there.
5. If you know someone who has delivered a preterm infant, give them a hug. Or send them a text and let them know you are thinking of them.
6. Understand that not every infant who was born prematurely comes home. Show patience and understanding a friend’s grief. Let them vent and listen.
7. Celebrate the strength of your NICU families, especially the preemies. Whether they are home with Mom and Dad, or home in heaven, acknowledge they put up a good fight. They deserve to be honored for that.
To all of the preemies both home and in heaven, this is for you. For the families who have endured the trenches of the preterm labor and NICU, this is a reminder not of your scars or the battles that you’ve fought, but for those you wear proudly. For those still in the trenches of the L&D and NICU, there is hope. I promise you, there is. It may feel like there is no end in sight, but it is coming. This is for you, all of you, all of us — and the scars we wear, the strength we demonstrate, the compassion we give, and the advocacy work we have to do.