Morgans story Part 1: Hank the Heart Angel- The Before

My name is Morgan, and I’m the mother of a beautiful heart angel, Hank. My family lives in Boise Idaho. While you’re reading this, there may be some triggers- infant death and general ICU trauma being the main ones. This post marks the beginning of our journey.

Like many other heart-baby stories, our story begins with my 20-week anatomy scan. My husband Shey and I were so excited to get to St. Luke’s, our local Boise hospital. COVID was still locking down the hospital and before my 20-week scan, I had been going to all my appointments alone. My heart lept when my OB told me Shey could come with me to see our beautiful baby on the big screen in the sonogram room! What a joyous moment to share with my husband. I could imagine us holding hands and crying happily together, all while hearing our child’s heartbeat and watching their tiny bodies move on the television.

Our chocolate lab puppy Gus got out of our backyard when we got to the clinic. I laughed because Gus had the WORST timing- but as annoying as the situation was, it was equally cute to see his nose squashed against our doorbell camera while he waited on our front doorstep. Shey drove home to put him away before he was stolen or ran after a neighbor kid on their bike. Once again, I was on my own for my appointment.

In my previous scans, we couldn’t get good singular anatomy shots like kidneys, heart, or stomach because the baby was either moving too much or positioned awkwardly. No amount of pregnant jumping jacks or squats would help in those situations. I would be out of breath, panting after trying to get the baby to move, and my sonographer would laugh and say,

“Not today, baby A!”

“Morgan”. I stood up from my seat in the lobby and grabbed my purse, slinging it over my shoulder so I could follow the nurse to the sonogram room. I could feel the butterflies in my belly; the excitement of seeing my sweet baby again was making me giddy. I had planned on FaceTiming Shey during the scan and had my phone ready.

My phone never made its way out of my pants pocket. I remember sitting in my OB’s office, 45 minutes later, hearing the words no parent wants to hear.

“Something is wrong with your son.”

Our baby was diagnosed with a congenital heart defect called Pulmonary Atresia with Intact Ventricular Septum, as well as with a kidney condition called Renal Agenesis (one kidney). The right ventricle in his heart was severely underdeveloped, meaning his left ventricle was working overtime. His pulmonary valve was also not functioning.

We would find out in the coming weeks that after birth, our little boy would have to have a continuous IV flow of medicine called Prostaglandins, which would help keep his Patent Ductus Arteriosus (PDA) open. This would give his cardiologists and surgeons enough time to do an echocardiogram on him and figure out a surgical plan.

My breath seemed to come sporadically after receiving this news. I was focused on not crying in front of my doctor as he calmly explained what the next steps were, but that meant I only shot one-word responses in his direction. “Termination.” “No.” “Carrying your child to term knowing full well he may not live?” Well...yes. Yes. Yes. I took the fact that he was still alive inside me for a reason. He was a fighter already and deserved that chance.

I was sad that Shey wasn’t there to receive this news with me. It was terrifying and I desperately wanted to hold his hand...to cry into his shoulder. What should have been a day full of happiness ended with a sobbing phone call to my husband in my car. The next few weeks flew by, full of anxiety, research, tears, and doctors’ appointments. There were so many things to plan. Our son couldn’t stay in Idaho after birth because they don’t have a pediatric cardiac center. So, we started talking to Primary Children’s Hospital in Salt Lake City. Due to my high-risk pregnancy, we would have to move down to SLC a few weeks before our son’s birth.

After his birth, he would be transferred to Primary Children’s Hospital Cardiac ICU to be stabilized, have his first open-heart surgery called the Norwood, and eventually go home until his next surgery. We had an amazing Fetal Cardiac Specialist in Boise who eased our minds and took a few hours out of his busy schedule to talk us through Hank’s diagnosis and what his life would look like.

Children that follow the single ventricle program must have three staged surgeries, called the Norwood, Glenn, and Fontan to help reroute the blood flow in the heart around their anomalies. It takes the pressure off the one remaining heart ventricle and allows more passive blood flow into the lungs, therefore helping the heart not work as hard. This is considered a palliative care method, not a cure. Many children end up needing a heart transplant after being on Fontan circulation for several years.

In the meantime, it was early spring, and I was trying to finish out my last few months teaching preschool. My mind was always somewhere else. I always had questions.

"Do we have a baby shower? We had already named our sweet baby- his name would be Henry, but we wanted to call him Hank. Do we decorate the nursery? Do we tell people?"

Every time I looked in the mirror at my slow-growing belly, I thought about my unborn child. I grieved at the loss of a “normal” pregnancy, at the thought of Hank being taken from me within seconds of birth and poked with an IV, hooked up to oxygen and a million monitors. At how we wouldn’t get to have a golden hour. At how I would have to recover in the maternity ward of the hospital alone with Shey, surrounded by the soft sounds of babies crying and moms soothing, nursing, changing diapers, and eventually going home.

The jealousy of seeing my friends go home with healthy babies on social media was heartbreaking. Shey and I had many heart-to-heart conversations about Hank. We shifted our perspective to focus more on the positives- the success rate of the first surgery was in the high 80s percentile. The cardiac care team in Salt Lake was monitoring Hank closely. They had a plan. We were very blessed to find out about Hank’s heart in-utero- many families don’t find out until it’s too late.

Hank had made it this far-we needed to support him as much as we could. It’s all about perspective. We tried to find joy in small things. I savored the moments of quiet-just me and Hank. He would move constantly in my belly, often when I was sitting still or laying down. Hank and I tried to enjoy the last few months of pregnancy as often as we were able to; walking with Gus, eating all the fruit and donuts we could buy, and listening to music together.

I felt some relief knowing he was still safe inside me. Shey, my mom, and I decorated our nursery. We had a baby shower. We told our friends and family about Hank’s heart condition and how we would have to relocate soon. Our friends started a GoFundMe page and held a fundraiser to help us with food, lodging, and medical bills while we were gone. We rallied around each other in support.

We made plans for when Hank would come home from the hospital between his staged surgeries. Our support system grew to include our nurses, doctors, cardiology team, social workers, and many, many more people. Everyone was positive and uplifting, and we were so thankful for that.

Fast forward to June. Shey and I moved down to Salt Lake City on June 9th, 2021. We lived in U of U Patient & Family Housing outside of the city while we waited for Hank to make his appearance. After I recovered and was discharged from the hospital, we could move into the Ronald McDonald House, closer to the hospital. The days at Patient & Family housing were long and boring. I would draw, watch tv, or play games on my laptop while Shey worked remotely from our tiny 250 sq. ft. apartment. We'd laugh about how slow the internet was and how much I craved A&W root beer floats. We tried to get out and about often, even just for lunch or to walk around downtown. I was thankful to not be alone-to share this experience, Shey took a huge weight off of my shoulders, as I had someone to lean on for emotional and physical support.

Twice a week, I would have Non-Stress Tests and ultrasounds to monitor Hank’s heart rate and my blood pressure, and each time we would drive to the hospital my heart would race. Nerves would eat at me while I sat hooked up to the machines in the Maternal-Fetal Medicine Office. Would today be the day the doctor would induce me? Hank wasn’t due until July 15th, but he had stopped growing two weeks ago. Red flag.

During each appointment, my doctor would look at me and say, “Morgan, I don’t know what the hell to do with you. He looks fine. He’s not growing, and your fluid levels are dangerously low, but he isn’t stressed out at all. He’s cozy in there.” Um...okay? So, we wait until the next appointment. I guess Hank had his own plan, because at 3:00 AM on June 22nd, my water broke. Hank was coming.