By Angela Parker

Having children and a family of our own was a dream and huge priority for my husband and me. Unfortunately, we dealt with fertility issues for many years, and our first son, Quinn, was conceived via in vitro fertilization. Finally, a beautiful boy that we considered our miracle. Little did we know what was to come. Twelve months later we found out I was expecting our second child. We were ecstatic with this news, especially that it happened “naturally.” My pregnancy went smoothly, and as my first hospital birth had been a breeze, we made the decision to have a home birth.

Cohen

Cohen

Our second son, Cohen, was born on April 10, 2017. It was a peaceful and perfect water birth, in the comfort of our home with my husband and mom by my side and my dad watching Quinn upstairs. Cohen was a perfectly plump, beautiful little boy who immediately won our hearts. Our midwife fully examined both Cohen and me, and we planned a follow-up phone call and visit for the following day. We bonded, soaking in the joys of our new little love. Our midwife returned for the follow-up, and while examining Cohen she noticed that he was working hard while nursing. She checked his oxygen saturation, and yes, something was off. Her advice was to head to Royal Inland Hospital, our local hospital in Kamloops, where she would meet us.

I was devastated. Something was wrong with Cohen, and we had wanted to avoid being in hospital. Once there, both Cohen and I were admitted, me for postpartum high blood pressure, and Cohen for what they presumed was an unknown infection. Two days later an echocardiogram was completed, and I heard those dreaded words, “There’s something wrong with your baby’s heart.” There was a sense of urgency, and we were airlifted to BC Children’s Hospital (BCCH). I called my husband, Emery, who was at home with our eldest, and gave him the news. Our plan was made quickly. Quinn would go with my mom, and Emery would drive to meet us at the hospital. He packed a bag for us, rushed to the hospital for a quick hug, and then started the agonizing four-hour drive to Vancouver. Cohen and I were airlifted to BCCH and arrived late on April 13. I felt like I was living a nightmare: completely in shock at what was happening and what was to come. I was relieved to have my husband and sister waiting at the front doors of the hospital for us as we pulled in. We were whisked away to the Pediatric Intensive Care Unit (PICU), where many tests were done. We learned that Cohen was born with critical congenital heart defects: transposition of the great arteries (TGA), an arterial septal defect (ASD), and patent ductus arteriosus (PDA). The two main arteries connected to his heart (the aorta and the pulmonary artery) were switched, and they said the reason he was doing so well was because of the holes in his heart. We spent that night in the PICU, and then we were moved upstairs to the ward to wait for surgery. During the wait, Cohen did quite well, considering what was going on inside his tiny body. Every day, despite his strength, his oxygen saturation dropped a little lower. He had to work harder to breathe and began to turn blue. We all knew that time was not on Cohen’s side, so the surgery date, April 18, could not come quickly enough. Handing him over to the doctors and nurses was one of the hardest moments of my life. On one hand, I wanted to throw him into their arms, as he was deteriorating and needed this life-saving surgery, but on the other hand, the risks were scary and could be devastating.

The 4.5-hour surgery wait was torture. Finally the pager we were given started to flash, and we headed back to the cardiac family waiting area. I will never forget the intense, overwhelming feeling of Dr. Gandhi and the PICU nurse entering the room. They sat us down and told us the surgery had been a success, but that Cohen was not in the clear. Seeing our tiny newborn baby surrounded by huge pieces of medical equipment and covered in wires and tubes was shocking. It was something that parents should never have to deal with. Cohen spent two days in the PICU, two days on the ward, and then 11 days in Vancouver, close to the hospital. On May 3, we were discharged from cardiac surgical care and allowed to return home to Kamloops.

Today Cohen is bustling with energy and is a typical four-year-old boy. He is extremely smart and charismatic, and his beautiful smile lights up rooms. Fortunately, he has not had any cardiac complications, and recently, he was cleared by Cardiology for another two years. I am constantly amazed by how strong and resilient our heart children are, with their consistent urge and fight for life. Cohen’s heart journey will be lifelong. Unbeknownst to us, our family heart journey would expand with the birth of our third little boy, Nash.

Nash

Nash

The decision to have another baby after dealing with trauma and complications with Cohen was not an easy one. Coming from large families ourselves, we knew there was strength in numbers and that we wanted to give our boys another forever friend. We decided to use one of the three remaining frozen embryos that we had stored.

My pregnancy started out uncomplicated, and due to our history, we were very closely monitored. At week 32 I recognized that something wasn’t right. My belly was much bigger than in my previous pregnancies, and yet I followed the same healthy eating and active lifestyle that I had done previously. Ultrasounds confirmed that yes, I needed specialized clinical care. A referral was made to the Maternal-Fetal Medicine clinic at BC Women’s Hospital in Vancouver. Eventually we were told that we would need to relocate to Vancouver, as my pregnancy was complicated and deemed high risk. Two days later we were back in Vancouver, as a family. I was diagnosed with polyhydramnios, which is an excessive amount of amniotic fluid buildup. No definitive diagnosis was given for the baby, but our team speculated that something was wrong with his esophagus. Constant monitoring and back and forth from the hospital kept us very busy. We spent five weeks away from home before I was scheduled to be induced. Thankfully, my parents made the trip to be with us during the birth and to help us with our two older boys.

Nash entered our world at 10:30 pm on January 14, 2020. He was quickly placed on my chest for a kiss and then brought over to the group of professionals waiting to assess him. Because of the polyhydramnios and extra pressure on my uterus, the placenta did not shrink. I was unable to push it out, which caused my body to hemorrhage and prompted surgery. Nash was brought to the Neonatal Intensive Care Unit (NICU) at BCCH, which became our home for the next 10 weeks.

While small and mighty, Nash has been facing battles since day one. He was born with a condition called VACTERL association. It is an association of birth defects that affects multiple parts of the body. The term VACTERL is an acronym, each letter representing one of the more common findings seen in affected individuals: V = vertebral abnormalities, A = anal atresia, C = cardiac defects, T = tracheal anomalies including tracheoesophageal (TE) fistula, E = esophageal atresia, R = renal (kidney) and radial (thumb side of hand) abnormalities, and L = other limb abnormalities. Nash is affected by five of the seven letters represented, so is seen as VaCTERl.

Our 10-week NICU stay included three major surgeries, pleural effusion, pyloric stenosis, congestive heart failure, two episodes of supraventricular tachycardia, and numerous tests and procedures. As he was unable to swallow, Nash struggled to eat and was given a gastrostomy feeding tube. He was followed closely by Cardiology, and we were told that surgery was imminent, but they wanted to wait for him to grow bigger and stronger. On March 27, due to COVID and our longing to get home, we were finally discharged.

After 15 months and many appointments with Cardiology, we were informed that it was time for heart surgery. Nash’s surgical dates were rescheduled twice due to him having a cold, but the third time he was healthy, and we were ready to proceed. Dr. Gandhi was once again our surgeon, and I was thrilled with this news. We were comfortable and confident in his abilities. On September 27, 2021, Nash had open heart surgery to repair the hole in his heart (ventricular septal defect, VSD). The surgery went well, and he spent one night in the PICU, one night on the ward, and eight days at Ronald McDonald House. We are hopeful that Nash will not need any more surgical interventions, as he is currently healing from a recent hand surgery.

Looking at Nash, you would never know what he has been through during his two short years. Today I see a vibrant toddler who is full of life, smiles, and perseverance. His determined nature allows him to blaze through life, and he continues to amaze us every day.

The sounds and smells of the hospital will forever be ingrained in my mind. I cannot thank enough those who had a place in saving our boys’ lives. I am so very blessed and grateful to my family and friends who have helped us along our journey. Their constant support, positivity, and love have guided us through some of our darkest days. I am also grateful for the Children’s Heart Network. We have been a part of this special group for four years now, and the support, education, and resources that we have received have been amazing. We have connected with many other families who have similar journeys, and from this, we are all able to find strength.

Life with two children diagnosed with congenital heart disease has been overwhelming and stressful. Luckily, we have been able to see the silver lining to our journey, which has encompassed many life lessons. Our boys, as well as our nieces and nephews, have demonstrated unwavering compassion while keeping us grounded with their never-ending sense of wonder and joy. We have a greater appreciation for life, and our outlook and priorities have shifted, reminding us to slow down and to appreciate the “little things” a lot more. ♥

Quinn, Cohen, and Nash

“Our Heart Story” is from our winter 2022 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.