By Heather McEachern

Sophia Madeline was born almost a month ahead of her due date on January 10, 2012. But her heart story goes back to when she was diagnosed with a heart condition during the 20-week gestation ultrasound. What started out as an exciting and much anticipated time for my husband and me became very stressful and uncertain as the news of having a child with a heart defect became a reality for us.

The initial diagnosis we were given at the 20-week ultrasound changed a few times while she was still in utero during the frequent ultrasounds we had performed at BC Children’s Hospital during the final half of the pregnancy. That first diagnosis of a ventricular septal defect changed to include interruption of the aortic arch and then hypoplastic left heart. The final diagnosis after she was born was Shone’s Complex (or Shone’s Syndrome), which consisted of coarctation of the aorta, parachute mitral valve, and aortic stenosis.

We had a lot of questions and worries in the final weeks of pregnancy that brought on anxiety about the birth. Would either of us be able to hold her after her birth? What intervention, if any, would she need right away? The images of me labouring while walking the hospital hallways or soaking in a warm tub were replaced with the understanding that the baby would need to be monitored continuously during labour and delivery, so there would be no chance to walk or soak while hooked up to the fetal monitor. As a first-time mom, I worried about not having that first skin-to-skin contact with her immediately after her delivery to secure our bond.

In what we now know is typical Sophia fashion, she decided to make a big entrance on the early side. Her early arrival turned out to be a blessing, as there was no stressful countdown during the final few days; she just decided it was time to make her entrance into this world on her own terms.

After her birth, we were allowed a quick showing to us, and then she was taken to the PICU, where she spent several days being closely watched, followed by a few more on 3M, the cardiac unit, where I was able to stay with her after I was discharged myself. I remember that time being very stressful for me as a first-time mom. I was recovering from a C-section, learning to breastfeed, pumping frequently, shuffling down the hallway to keep the tiniest amount of milk chilled, all while watching over a newborn in an environment that was not our home.

She was discharged home seven days after her birth; however, after a scheduled cardiology follow-up appointment at two and a half weeks old, she was admitted again for her first surgery to repair the coarctation of her aorta. Sophia recovered quickly, as many children do, and was home again within the week.

Her follow-up visits to her cardiologist were extended each visit we were there: monthly became every two months, three months, then every six months, and we’re now holding at an annual visit.

Her cardiologist has always said they would detect any worsening changes on her scans before we would ever see anything ourselves. While this gives us reassurance that she’s being carefully monitored and intervention will take place as soon as it’s needed, it also means we won’t know in advance when to expect another surgery or procedure.

At four years old, she had a cardiac catheterization and aortic balloon valvuloplasty to fix severe aortic valve stenosis. Prior to the procedure, we weren’t able to outwardly see any signs of distress from her. She tolerated the procedure well and was discharged home that same day.

Sophia just turned nine years old this January, 2021. She is a very happy, healthy, and energetic girl who plays sports, swims, and ice skates regularly and takes dance classes. In May 2019, she became a big sister to a little brother who was born heart healthy. Any concerns we had about forming a strong bond with her while she spent so much time in hospital at the beginning were for nothing. When we brought her home from the hospital the first time, we spent as much time as possible with her and had very few visitors. Frequent feedings and interrupted sleep, although exhausting, were extra time we both were able to spend with her.

The thoracotomy scar from her first surgery that runs along her back on the left side healed nicely and isn’t very noticeable; in fact, she forgets she even has it since it’s not visible to her. Her dad and I remind her that her scar is a badge of honour that only some kids get to wear.

Through the Children’s Heart Network, we’ve made connections with other heart families at the fun activities they put on. During Sophia’s early years, I found it so helpful to meet and speak with other heart families. Our children are so different, and yet our heart stories are often similar in the struggles we face with their diagnosis and the uncertainty of what to expect for our children as they grow up. We have always been told by Sophia’s cardiologist to let her do what she wants, and her body will let her know if she’s unable to do certain activities.

Sophia’s heart story began before she took her first breath, but it continues to be written every day and will be for the rest of her life. ♥

“Sophia’s Heart Journey” is from our winter 2021 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.