Australian heart mum, Ellie Boyd, found out about her son’s congenital heart disease (CHD) when he was three days old. Here, Ellie tells us about what life was like after receiving this diagnosis:
Remi was just three days old when his CHD was discovered. He was in the NICU being monitored as he failed to pass the meconium.
I will never forget the doctor’s face as she listened to his femoral pulses that day; it was as if time stood still, she went back and forth all over his tiny body with the stethoscope. I held my breath, and as she looked up at me and shook her head, I knew something was very wrong. Immediately, an echocardiogram was ordered, and within minutes the sonographer was there with the ultrasound machine.
About 20 minutes later another doctor appeared in our room, with a diagram of a heart in his hand, and a serious look on his face. My partner and I looked at each other, and I remember mouthing this isn’t good.
Our son had multiple heart defects, none of which were picked up antenatally. The biggest issue Remi faced was the coarctation of the aorta (CoA)… his heart was failing. As I stood over the NICU crib, watching his laboured breathing, I sobbed and sobbed. I couldn’t believe this was happening to us, though I felt I had to be strong for my boy.
The doctors and nurses now worked very quickly, starting him on life-saving medication and arranging the transfer to a more specialist hospital.
He flew the next day, in an induced coma, without my partner and I. This is something that breaks my heart to think about. Although I understood the necessity of all the choices made for Remi’s excellent care, my emotions and guilt still ran rampant.
At five days old, Remi had heart surgery to repair the coarctation. The surgeon sat us down prior, explaining Remi may die or have other complications from this. When the time came to take Remi to the theatre, the anaesthetist whispered: “I’ll promise I’ll take good care of him.”
Four hours later, the surgeon called to say it had been a successful repair, and Remi was back in the ICU, stable. The feeling of relief mixed with utter worry for the future is something I’ll never forget.
Two days later, Remi underwent another surgery due to two displaced ribs from the repair. He also had wet lung (acute respiratory distress syndrome), and was struggling with his breathing.
However, every day post-surgery, Remi became brighter, cried a little louder, was more interactive, and his laboured breathing improved. The resilience and strength of this boy was truly remarkable. I beam with pride thinking of how far he came in those short few weeks in the hospital.
Remi also has a congenital bowel disease called Hirschprung’s. If it were not for this, we wouldn’t have been in the NICU and his CHD wouldn’t have been picked up so quickly.
Although Hirchsprung disease is another huge hurdle for Remi, I am grateful every day we were in the position we were, as it meant my son received the prompt life-saving care he did.
CHD does not define Remi or our family. Remi is so much more than a sick little boy. He is now seven months old; he is cheeky, giggly, clever and so loving.
Those first few months of parenthood were incredibly difficult for my partner and I. We fought and bickered a lot, which is unusual for us. We were both on edge constantly, and our nervous systems were incredibly activated from the trauma.
Through communication, perseverance, and the sheer love we share for each other and our darling boy, we have made it through the trenches of those darker times and have come out the other side to a much happier place.
Being a NICU parent is so hard, and I implore anybody going through something similar to seek all the help you need and never be ashamed to ask for support or seek counselling services.
I hope by sharing a little snippet of our story, you might feel less alone on your journey, and please give yourself some credit for the wonderful job you do every day parenting these heart heroes.
With love and kindness,
Ellie Boyd
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