Processing my diagnosis alone in the NICU was rough. I didn’t really understand the gravity of it all. It didn’t feel real.”

Amy Dolan, 30, lives in western Rhode Island with her husband and four children, Gehrig, Eila, Finley and Theodore. Before her pulmonary hypertension diagnosis, she worked in administration for an accounting firm. She and her family recently moved to the country and have four dwarf goats that they love to spoil. This is her story.

By Amy Dolan

I had just turned 30. My husband threw me an amazing surprise birthday party and flew my childhood best friend out to celebrate. I was six months pregnant with our fourth child. Earlier in the pregnancy and over the prior year, I was seeing a hematologist and rheumatologist to solve the medical mysteries my blood presented.

I had received blood transfusions, and the jury was still out on what caused my hemolytic anemia, a blood disorder where red blood cells are destroyed faster than they are made. Lupus and Sjogren’s syndrome frequently came up at doctor’s appointments and in my later Google searches. I was diagnosed with lupus and Sjogren’s syndrome in 2019.

I was winded, tired and pregnant. It was right before Thanksgiving 2019. My 6-year-old had just come home from the dentist. She was devastated after having her front teeth pulled. I promised that when I got home from my doctor’s appointment, we would snuggle and watch whatever movie she wanted.

I left for my obstetrician checkup, and I was really feeling the breathlessness and strain that so many people chalked up to my being pregnant. This wasn’t my first time carrying a baby, and I knew it wasn’t the same windedness I’d felt at the end of my other pregnancies. I told my OB that something felt wrong, and she sent me to Women & Infants Hospital in Providence, Rhode Island, for a chest X-ray. I figured I would be in and out in less than a half hour.

The details are blurry now, but before I knew it, I was in a johnny (hospital gown) in the emergency room waiting on tests. I met a lot of new doctors and ended up at another hospital for a right heart catheterization. The numbers meant nothing to me, but my heart was basically failing. I left home that afternoon thinking I would be home in an hour or so to snuggle my then-middle child. I thought I would be home in time to get my oldest off the bus and make dinner. I thought I was going to work the next day.

Doctors filed in and out and asked me the same questions. They congregated outside my room and talked quietly. Finally, I was told that I had pulmonary hypertension (PH) and there was a possibility my pregnancy wouldn’t continue. I had never even heard of PH, and it didn’t sound particularly menacing. My husband and I sat there with blank expressions when the diagnosis was announced. The wall of doctors glanced back and forth at each other and at us until they found the right words to convey the severity of the situation.

They wanted to keep me in the hospital and pregnant for as long as they could, but they made zero promises. I wasn’t due until Leap Day and the thought of being in the hospital for that long didn’t appeal to me.

Did I mention that we had just bought our dream home on five acres in a new school district? Our closing date was Dec. 12. I was in the hospital for that. My kids were nervous about going to a new school, and I wasn’t able to be there for them. I was crushed, but I really did not have a grasp on what my diagnosis meant.

I was miserable in the respiratory intermediate care unit (RICU), missing my kids and watching my muscles seemingly dissolve in front of my eyes. My nurses and doctors became my closest friends, and I just wanted to go home. My husband brought me Christmas presents to wrap to pass the time. My kids came to visit me and were obviously worried about me, which made me feel guilty. I was getting text messages and emails from people I hadn’t spoken to in years, wanting details or sending prayers. The specialty nurses came to train me on my medication and pump. I despised the pump. I still do.

After a lot of convincing, my doctors agreed to let me go home for Christmas. I sold it by explaining that I should go home and get comfortable mixing my medicine and caring for myself before having a newborn. I went home for a couple weeks and then had to go back for a scheduled cesarean section seven weeks early. It’s an odd thing to check yourself into an intensive care unit (ICU). I also had to deliver at a hospital that doesn’t have a maternity ward.

My baby was taken through a tunnel to another hospital while I stayed at Rhode Island Hospital. I didn’t hold him for several days. He was 4 pounds. I’ve never known such emotional anguish. After delivery, my medication proved to be way too strong for my newly unpregnant body. I had severe migraines, diarrhea and bouts of vomiting for several days. Eight days postpartum, I was discharged. I went home feeling very weak and sick. I showered and spent every other night for the next four weeks in the neonatal intensive care unit (NICU).

Processing my diagnosis alone in the NICU was rough. I didn’t really understand the gravity of it all. It didn’t feel real. I constantly felt guilty. When I was in the NICU I felt guilty that I wasn’t with my older babies. When I was home with them, I felt guilty for not being in the NICU. I was pumping constantly to provide breast milk as much as I could. I was cooking meals I could bring to the NICU, packing lunches and doing laundry. I was healing from the C-section, and I was unpacking in our new house that oddly didn’t feel like home until the day I got to bring my baby home to join our family.

My diagnosis is still relatively new to me and my family. It can feel isolating and overwhelming and I’m still working to be OK with it all.

Does Amy’s story resonate with you? Inspire and give hope to the PH community by sharing your experience with PH. Submit your story here, and read more stories from PHA’s Right Heart Blog.