by Kristen Barton
At the beginning of my pregnancy, I had recently separated from the military. My husband and I were both Hospital Corpsman in the United States Navy. We thought we were knowledgable and prepared. I took Lamaze, breastfeeding classes, and baby boot camp. You see, I am an A-type personality with hardcore planning goals. My pregnancy of our first child was perfectly healthy until my third trimester. My troubles started with Gestational Diabetes. I was then scheduled for a 38-week induction due to babies usually measuring larger with this condition. I was ok with this until one of the worst things possible happened. I was 34 weeks and two days, when my headache wouldn’t go away. I knew headaches were associated with blood pressure so we went to triage. It turned out I was right, and my blood pressure was severe Preeclampsia. Then my room became full of midwives, nurses, and doctors. I knew this was not normal.
HELLP syndrome (hemolysis, elevated liver enzymes, low platelet count) a rare disorder that occurs in less than 20,000 cases a year. My husband and I had never heard of it even with my past work experience in OBGYN and Maternal-Fetal Medicine. After they explained my condition, I then realized I wasn’t going home, and I was having the baby that weekend. Remember, when I said I was a planner? Well, my original birth plan was gone. I thought once we had the induced c section, the scary part was over. The hardest, most painful part was to come.
My son had all the symptoms of early birth. Lack of lung development, feeding challenges, reflux issues, and heart rhythm irregularities. I understand why medical providers don’t usually want to bring these topics up to parents during pregnancy. Why make people worry when there is no need, right? My husband and I are the parents who want to know as much as possible. I wish we had been educated, even if briefly on what could happen and how to adapt. Not having family close made our experience that much more difficult. I still remember laying in the hospital bed after surgery, not being able to hold my son. It was twenty-four long hours before I could go to the NICU to hold my child. My husband often went to see him, and I was left laying there with feelings of jealousy and anger. I just wanted to breastfeed and hold my son.
After almost two weeks of recovery and NICU support, we were able to take my son home. While I know I am fortunate compared to some who have longer NICU journeys; I still have intense negative emotional distress remembering those weeks. To make matters worse, I had constant breastfeeding issues and panic attacks in my sleep for months. I know now, I probably had post-traumatic stress disorder. There is literature about NICU parents, both male, and female, having PTSD (Clottey & Dillard, 2013). Why is PTSD not a standard screening for both parents?
My message to other parents is that you are not alone. You will get through it. It’s okay to feel anger, joy, sadness, love, anxiety, frustration, and loneliness. Just know that you are amazing. You went through something traumatic and beautiful at the same time. My son is one of the best blessings I have ever received, but it was still traumatic. Going home alone without your child may feel like one of the hardest things you ever have to do. However, know that it is best for them.
My message to family is that no matter how much we say we are ok, keep trying to stay connected with us. The best thing you can do is listen and help with little things. If we don’t call or post photos on Facebook, don’t harass us. Maybe taking pictures of our baby with an NG tube hurts us or a NICU day didn’t go well. No matter what, know we appreciate you; it’s just difficult sometimes. For HELLP syndrome, women are high risk for future pregnancies, and recently, researchers discovered the risk of potential cardiovascular disease for the mother (Muijsers, Maas, Heijden, & Frings-Dresen, 2018). The risk taken on, to have more children, is a personal decision between a couple. Please respect peoples’ wishes not to have any more children and don’t push your opinion on them. Unless you went through that experience, you may never truly understand the endless fear that could be caused by dangerous pregnancies.
My message for medical providers is, please educate parents more on preemies. Having that educational opportunity is better not used than not being equipped at all. Please share resources, like the Graham’s Foundation with NICU parents. During a NICU experience, one resource could make all of the difference for support, especially for military families. For military families, please learn about the Fischer house or Ronald McDonald house, and refer us even if we don’t need it. Depending on the military base, we may have to drive hours every day to bring breast milk to our child or children in the NICU. So not being able to do that, can you imagine the parental guilt, because we know breast is best.
On that note, I want to thank Naval Hospital Camp Lejeune. I will always be grateful to the fantastic NICU, Labor/Delivery, Lactation Consultants, and Mother-Infant Care unit staff for keeping Killian and I thriving. Without all of these teams working together, we wouldn’t be here. I also want to thank my family/friends for all of the love and support. It truly makes a difference.