The anatomy scan: a definitive moment in pregnancy, filled with anticipation, anxiety, concern, excitement, and validation for those intuitive moments from the 20 weeks prior. I clearly remember walking by the play area in the waiting room when an unsettling feeling started to take over my body. I followed the ultrasonographer into the dark room with my husband, Matt, and 14-month old daughter. I tried to push down the feeling that something was wrong as I laid back in the chair, but mother’s intuition is never wrong.
A Different Heart
Since that day I’ve come to curse and thank God for that power. We found out right away that we were having a boy. Then she moved on to look at the other organs. I could see the pulsating motions of the heart as she settled on a spot on my belly. She pushed a little harder. I glanced at her face. She was concentrating. She adjusted the movement of her hand and I could see it, too.
The heart looked different than I remembered from my daughter’s anatomy scan. The ultrasonographer looked at me and said something was wrong with the heart. She quickly left and returned with the first doctor she could find. He wasn’t my doctor, but he put his hand on my shoulder and told me that I would need to be referred to Maternal Fetal Medicine and would need a fetal echocardiogram done on the baby. It seemed the baby may have some kind of a heart defect. I remember crying and not understanding anything.
For the next 10 days, I couldn’t help myself and googled Congenital Heart Defects obsessively. I had no answers and I was trying to find some kind of meaning and understanding while I waited to meet with a cardiologist. When my husband and I finally met with the cardiologist and had a fetal echo done on the baby, clarity didn’t come.
Instead, hundreds of more questions followed and a future for our baby I couldn’t seem to imagine. We learned our son indeed had a heart defect. From the fetal echo, the Cardiologist could tell he had Pulmonary Atresia, and possibly Hypoplastic Right Heart Syndrome. He made it clear that he expected our baby to make it full term, but would immediately need intensive care and open heart surgery. We learned that only 50% of heart defects are found in utero and we were very grateful that we had time to prepare for his birth and care. We knew his life would start in the ICU.
Time to Prepare is Shortened
My son’s heart rate dropped on October 31st. I had been meeting with Maternal Fetal Medicine every week after our son’s diagnosis. When they noticed his heart rate dropped, they moved quickly and decided he needed to be delivered right away. His due date was still 20 days away. We quickly arranged for the family to take our daughter, told my mom in New York to get on a plane right away, and drove to the University of Utah.
People kept joking that I needed to make it past midnight so I didn’t have a Halloween baby. I didn’t care. I just wanted him to be safe. I was induced and labored throughout the night. Labor was uncomplicated and by morning, doctor after doctor came in to meet with us to prepare us for our son’s birth. Everything seemed well enough for him to be delivered vaginally, but he would be taken immediately to the ICU and there would be no time for me to hold him.
When it was time to deliver, I was wheeled into a tiny operating room. The room was filled with people busy at work, ready to receive him. I remember the L&D nurse holding my hand tightly guiding me through. The doctor that caught my son saw the look on my face and immediately placed him on my chest. He was crying, breathing, pink, and beautiful. I kept saying over and over “Is he ok? Is he ok?”
The doctor handed Matt clippers and he cut the umbilical cord. The doctor wrapped our son, handed him back to Matt, who was then instructed to quickly hand him through a window to the ICU nurses. Our son, Milo, was gone within a minute of birth and we didn’t see him again until after he was transported to Primary Children’s Hospital, hours later.
Initial Tests & Procedures
Milo was placed in the Cardiac Intensive Care Unit. He went through a catheter procedure, CT scans, blood draws, MRIs, and was hooked up to several machines to monitor his heart, breathing and organs. His official diagnosis was more dire than previously thought: Pulmonary Atresia with Intact Ventricular Septum, Hypoplastic Right Heart Syndrome, a tortuous PDA valve, and right ventricular coronaries. I won’t explain it all, but his heart was rare, with very little data out there on the mortality of babies born with his exact diagnosis. We were headed almost blind into unknown territory.
Suddenly we were having conversations about taking him home to pass away, heart transplant, or surgery with a low mortality rate. We attempted surgery, but he had a defect that blocked it from being successful, and the surgeon backed out almost immediately after starting. So we ended up deciding on a heart transplant, fully knowing it would take 4-6 months to receive a heart and Milo could very likely pass away while waiting. His defects were so severe, he couldn’t wait in a recovery unit, and would need to spend all his time in the Cardiac ICU.
Living in an ICU
It’s hard to describe living in an ICU unless you’ve experienced it. The first week was difficult, the second week, unbearable. After three weeks in the ICU, Matt and I finally found a rhythm that worked for our family and we started to enjoy the time we had with our son. We were able to work out a schedule with the help of family and friends that allowed me to stay with my son fulltime and my husband was able to come up twice a week.
We spent almost 4 months in the ICU. We watched other babies come and go quickly. We met many wonderful families and made dear friends. Every now and then, we would hear a code blue and cry for the families whose lives changed forever.
Milo’s stay in the ICU was not easy. His heart would do unexpected things, his body would turn blue, he’d have a reaction to medication, or to his milk. He got E. Coli and NEC. In total, he went through 3 catheter procedures during his stay to help keep his heart beating. He always surprised us at every turn and would recover anytime the doctor’s feared he was permanently declining. I watched my baby go through things I’ve never experienced myself. It’s hard to see your child suffer and I prayed everyday he wouldn’t remember any of the pain.
I held him as nurses sewed stitches into him to hold his picc line in place. I soothed him as they drew blood, or had to replace a feeding tube he pulled out. I did art and music therapy with him, and held and played with him any chance I got. He was often stable enough that I could pull him from the crib. After a few months, I was the one bathing him, placing all his new lines, and learning how to change feeds. I was taught how to do his medications and place a feeding tube in case he got to come home one day.
After three and a half months, Milo’s health seemed to worsen drastically. He’d have a smile on his face while he struggled so hard to breathe. He was on high flow, oxygen being pumped into him, and he was still blue. We knew we were running out of time and a new heart was not coming. We knew we were eighth on the list and probably months away from receiving a heart. We had a decision to make. We could wait, or try surgery again. The difference this time was he was bigger and a little stronger and surgery might actually work.
I remember talking to his doctors when they told us surgery was an option. I looked at the large group of medical professionals around us I’d come to know and develop friendships with. It seemed like their eyes were all on me and Matt. We learned to trust these people, understand how they work, and saw how much they genuinely cared about their patients and their profession. We considered the options and the outcomes and decided to move forward with surgery.
The morning of surgery, Milo had a heart attack. It was clear time was up for him. His surgeon was able to save him and move quickly into open heart surgery. Surgery lasted hours, but Milo was finally wheeled back into the ICU, hooked up to more machines than I could count, with tubes and wires coming from every limb. The doctors and nurses put their arms around us as they told us surgery was successful and the next few days were crucial to recovery.
Within a week, Milo was moved from the ICU to the recovery unit. He was smiling, babbling, waving at his nurses. His cheeks were pink, his heart rate beautiful. He was still on oxygen, but at a rate that was manageable. After 3 days in the recovery unit, he was cleared to finally come home! Milo was born on November 1st, and he came home on February 18th.
Our time in the ICU was life altering. We had experiences we could never have imagined, but are better because of them. We met incredible healthcare workers, strong families, and saw miracles. We experienced a lot of pain as well. I shed more tears in those months than probably in my entire life. We watched other families go through pain and grief we have not experienced and it’s hard to understand why so much pain exists. It changes you and sometimes I wonder how the healthcare workers can bear it. My son’s nurses carried us through some of our darkest moments. They not only cared for our son’s physical health, but took on the care of our family. I don’t know if it’s part of the job, but they helped us get through moments we didn’t know we’d make it past. I will forever thank them for their care and concern for our entire family.
Our son will be 4-years old on November 1st. He isn’t cured, but his surgery put his life on a path that has been wonderful for him and our family. He will still need more surgeries, but he’s a happy kid, who plays and acts like any other wild toddler out there. His life had an incredible beginning and I think it set the precedent for what’s to come.