My preemie story began about 10 years ago. Pregnant with my first child, I watched as friends and family progressed through their own pregnancies without incident. I had planned to do the same. Sometimes plans change...

At my 20 week OB visit I was feeling pretty good. Then came some surprising news - twins? A little panic, a little excitement, and we were on our way to confirm with ultrasound. Yes, twins! The babies looked fine and we shared the news and changed some of our plans. I worked less, we stepped up the house search, and bought a few more of, well, of just about everything!

Then….29 weeks. My blood pressure sharply rose, hands and feet swelled, and I didn’t feel well at all. Bedrest was ordered and within 24 hours, I was experiencing pretty bad back pain. My OB had me meet her at the hospital just “to check me out” since a big snow storm was forecast. Good news…I was not contracting and had not dilated at all. The bad news came a bit later when lab results revealed I had developed HELLP syndrome. All I remember hearing is “You are going to have your babies today.”

HELLP is a syndrome of pregnancy identified by the presence of hemolysis, elevated liver enzymes, and low platelets (less than 150,000/mm3.) It occurs in 0.5 to 0.9% of all pregnancies and in 10-20% of cases of women with severe preeclampsia. It can also develop without changes in blood pressure. Signs and symptoms include headache, nausea and vomiting, upper abdominal pain, and vision changes. Serious complications can include DIC, hemorrhage, renal failure, and ARDS.  Treatment consists of corticosteroids, magnesium sulfate, and delivery.

So, my twin sons were born at 29 weeks by stat cesarean section. We experienced the roller coaster ride of the NICU for 2 months. I spent most of that time in a daze as we navigated our way through many of the preemie complications - NEC, IVH, sepsis, aspiration, ROP, PDA, A’s & B’s, and then some - a whole lot of abbreviations and acronyms that I had never heard of as an adult ICU nurse. Sure I knew the effects of dopamine, but administration through an umbilical vein? Never did it.

The story did not end there in the NICU however, as most parents of preemies are well aware. My sons came home on cardiac monitors, oxygen, and several medications. Growth was slow and development delayed. Lots of therapists, evaluations, pediatrician visits, and emergency room visits ensued. We remained isolated for 2 years for fear of RSV and handwashing became an obsession. It was a tough journey and I am lucky to report now that my boys have caught up to their peers. They are in fourth grade, do well in school, and play sports and video games just like their buddies.

We are lucky. Not every preemie catches up. Not every preemie goes to school. Not every preemie can feed themselves. Or talk. Or walk. Not every preemie survives. We are so lucky.

November is Prematurity Awareness Month. Did you know that one in eight babies is born prematurely? That more newborns die from prematurity than any other cause? And that the effects of prematurity can last a lifetime?

I hope sharing my own story can help raise awareness. As nurses, patient education is a top priority. Please remind women that while pregnancy is a natural process, no pregnancy is without risk. Tell women to listen to their bodies. No one else knows how they feel. Back pain is typically not a sign of preeclampsia and HELLP. I am lucky. My boys are lucky.

References
The HELLP Syndrome: Clinical Issues and Management: A Review
The March of Dimes
Emergency Care for Patients with HELLP Syndrome