A Second NICU Stay; an Unexpected Heart Surgery

February 21, 2022

“Love for another baby in the NICU was not an emotion I was allowing myself to feel again.”

american heart month, NICU baby, hand to hold

by Christine Tester

Moving to another country is always exciting, but it was made all the more so when we found out we were pregnant with our third child just a few weeks after arriving. Navigating a new healthcare system, as well as getting to know a new city and taking care of our 8-month-old son, was challenging. I had been categorized as high risk during my second pregnancy, as my first had resulted in a premature birth at 28 weeks gestation, and a traumatic NICU loss six weeks later. I delivered my son at 37 weeks without any major complications, so I felt relatively confident that I could have a smooth ride the third time round. Reassured by maternal fetal specialists and additional ultrasounds throughout the pregnancy, I managed to keep my anxiety in check, primarily worrying about having an emergency c-section as I had had with my first daughter.

When my son Charlie arrived at 39 weeks in December, I was shocked when I delivered a boy. I had been convinced throughout the pregnancy that I was expecting a girl. That first night I was still processing that I now had two boys, when we were told that they had detected a heart murmur. We brushed this off, knowing that more often than not, this is nothing to worry about.

It’s not always easy to reflect on key moments in your life when there is a realization that things are not going to plan. It was early evening, and they were taking a lot longer than expected to bring Charlie back. When the door to my room opened and a doctor we had never met bustled in, I remember thinking, “This isn’t going to be good.” Maybe I even said it out loud. Introducing himself as a pediatric cardiologist, he outlined the complications relating to our son’s aorta, even drawing a rough picture. He told us Charlie had a coarctation, a congenital narrowing of a short section of the aorta, and our new word of the day. Our baby was being transferred from the nursery to the neonatal ICU and would require an essential heart surgery within days.

When you have been in the NICU before, and especially when you have gone through a loss there, it’s hard to explain the fear that you are in the same situation again. My husband and I hugged and cried together, saying we would never, ever have another baby. My dreams of having a large family were instantly crushed. All I could think was, “It’s going to happen again.” I felt like I was being sucked back in time and space and had to prepare myself to say goodbye to another baby.

The next day I left the hospital with an empty car seat. I was so thankful to have my sweet toddler at home to greet me, but the Christmas celebrations seemed pointless. I think my husband cooked a turkey. I don’t really remember. It didn’t feel like a holiday. We took turns going to the NICU, because we had no one to take care of our toddler. Ominous clouds and rain reflected our moods as we drove to and from the hospital. Charlie’s heart surgery was scheduled to take place the day after Christmas.

Entrusting your child into the care of others – the nurses and neonatologists, the anesthesiologist, the surgeon – is one of the most challenging moments parents face. Pumping milk alone at home the night before, knowing your baby can’t be fed pre-surgery. Trying to hold yourself together in front of calm professionals. Holding your baby and hoping it won’t be the last time. Watching the doors closing behind your baby, not knowing whether you will ever see him alive again.

Part of my brain switched off, as I expected the same post-surgery news that we had received after my daughter’s procedure – that they were very sorry, but it had not been successful, and we should prepare to say goodbye. I kept wondering how they would deliver the news, whether I would feel the same and react in the same way, and how I would share the news with family far away, without feeling like a complete failure. Again.

I recognize now that I was likely in severe shock and likely experiencing PTSD relating to our first NICU stay. To me, baby surgery equaled the final step before goodbye, as I knew no different.

My first NICU baby had never weighed more than 3 pounds; Charlie was 7 pounds at birth, big by comparison. But in those post-surgery moments, he looked tiny and unfamiliar. Any NICU parent knows that it can be hard to bond with a baby in that environment. We build barriers around ourselves to compartmentalize our pain, in order to have the capacity to process the factual information that we are being given. Love for another baby in the NICU was not an emotion I was allowing myself to feel again.

Thankfully, the outcome was different this time. Following his two-hour thoracotomy, Charlie spent four more days in hospital, and then he was allowed to come home just before the New Year. Bonding with a baby who is visibly healing in front of you at home is much easier than with a baby hooked up to wires and monitors.

My two NICU babies do not completely define who I am today, but they have certainly shaped me into a person who might have been very different otherwise. I often talk about some of the lingering emotions related to my two experiences.

Hypervigilance and anxiety. Even now, years later, if he oversleeps (and he is a teen, so of course he oversleeps!), I have to go check up on him.

Guilt. I can’t quite dismiss that epic sense of failure that I was the one to cause this. Guilt that my body’s deficiencies, genetics and possible early glasses of wine before a positive pregnancy test caused a developmental glitch that he will have to deal with throughout his life.

Hope. We hope that medical advances and technology will always be ahead of him and give him a long and normal life with minimal medication and invasive treatments. We hope that he will always take care of himself and advocate for himself as we have learned to do for him.

Gratitude. We were told early on that as far as congenital heart anomalies go (we try not to use the word “defect”), Charlie’s is “not the worst.” At the time, that upset me, as I felt that our trauma was being minimized. But I look at those words with a different lens now. Charlie had one surgery and a catheterization three months later. We know now that it could have been much worse.

Trust. His cardiologist has been with us since the day after his heart surgery. We connected with and trusted her from the moment we met, and that has made our journey much easier. She reminds us that he has a lifelong condition and gives us the hard facts that we don’t always want to hear, but she has also patiently waited out our indecisiveness and many questions about medication, as well as our cautious approach to interventions.

NICU graduate, hand to hold

Photo courtesy of the author

Connection. Being in the NICU and trying to understand a new diagnosis is incredibly lonely. Neither does it really end whether you eventually go home with a baby – or without. For many, the emotional scars never quite leave us. Birthdays, anniversaries, sounds and smells can all be triggers that take you back to memories suppressed inside. Sharing our stories doesn’t mean we are stuck in the past. Inwardly, it gives meaning to what happened to us and helps us move forward, whether to never forget a child we have lost, or to celebrate how far we have come. Outwardly, it gives us the ability to connect with others and to walk alongside other families who are facing their own daily battles with empathy and understanding.

Pride. Charlie is a smart, funny, curious and truly extraordinary human, the perfect foil to his older and younger brothers (yes, I did have another baby). While we have always told him he should look at his scars with pride, we are honest about his condition and the reasons why he has to take care of himself, take his medication and go to his appointments. He was always ahead in reaching milestones as a baby and toddler, and despite restrictions relating to some physical activities, he is now a phenomenal competitive swimmer and passionate about music, marching band and Broadway shows.

Written for Charlie, Dr. Karen Wright and Dr. Stephen Dewan in honor of American Heart Month.