A Broken Heart – The Story of my Blue Baby

This story was shared by one of our Stay at Home Mum community members, Yvette.  We thank her for sharing her story with us here at Stay at Home Mum. If you would like your own story featured on the Stay at Home Mum page, please send your unique story to [email protected]. 

A Broken Heart

Mine is a story that is not uncommon.

In fact, today 6 babies will be born that will embark on a journey not too dissimilar from my own.  Sadly 4 will die this week as a result. But not many people know that, despite 1 in every 100 babies being affected.

My son was born with a congenital heart defect (CHD). He was a “blue baby”. I thank my shonky uterus for alerting me of it, if not for the extra scans it would have been missed, and my son would have been born in a hospital ill equipped for his arrival.

At 28 weeks I was so excited to see my baby on the screen again, and was having a good time as the sonographer pointed things out to me and asked me how my nursery was going and if I had any names picked out? And then she went quiet. She excused herself and came back with a senior sonographer, who told me he was just going to check something”¦ and then another person came in”¦. and then another”¦ No one would tell me what was wrong exactly; just they couldn’t see what they needed to see in his heart.

My OB scheduled an appointment for two weeks later and I calmed down a bit. 2 weeks? It must not be urgent. They didn’t see anything in my morphology scan, so it’s just a precaution, I kept telling myself.

2 weeks later I went for my scan and my little world came crumbling down. There was something wrong with his heart and I needed to see a cardiologist the next day for diagnosis.

I went alone because my partner had moved 3 hours away for work to help prepare for our new family. The scan took what felt like forever. Finally I was called into the doctors office, and he put a box of tissues on the desk.

My son would need open heart surgery. It wasn’t a maybe, or a possibility. He needed it.  I couldn’t give birth in my local hospital because there was no NICU.

I blamed myself, I thought why me? What did I do? Why my baby? Was it those antibiotics I took? It was nothing I did, it just happens, it has always just happened. I didn’t know about the support groups I do now, I didn’t know of the organisations that exist to help people who are in my position. It was a lonely time.

I gave birth to my son by emergency c-section late at night after spending days in hospital, hours away from home, waiting to go into labour. He was pink and screaming, my partner cut the cord, and he was taken to NICU to be monitored. He would have surgery in a month.

Early that morning I lay in bed unable to sleep, when a nurse came and told me was having trouble breathing and had gone blue. Next I was told he was being taken to the children’s hospital in Sydney. I was stuck in my bed, unable to move, surrounded by woman and their healthy babies. I could hear them refer to me as the “crying lady” through their thin curtains as they talked to their visitors.

I followed him to Sydney where he was re-diagnosed, and needed intervention immediately. They decided to try something new, and placed a stent in my baby’s heart to stop the duct that was closing and shutting off his blood supply.

It worked, and 2 weeks later we took our little bundle home. A bundle that had a bluey tinge to the skin even in summer, who breathed heavily and earned himself the nickname “puffing billy” by his grandma. A baby that could only manage small frequent feeds as he tired so easily. But he was home with us. And that’s what mattered.

As he got older, he got further and further behind. At 10 months he could not even roll, and doctors decided it was time to operate. I handed my baby over, not knowing if I would see him alive again. That day my baby’s heart did not beat for 3 hours and 28 minutes.  8 hours later we were called to his bedside in the paediatric intensive care unit. He was attached to many beeping machines, there were tubes sticking out of his abdomen, IV’s in every available vein, and a machine breathing for him that made his chest move in a robotic kind of way.

Three week’s later, we took our bouncy baby home. A baby that was pink, and full of energy! But his breathing did not resolve”¦

10 months later to the day, I was once again standing in ICU, my son attached to even more machines, with twice the amount of tubes coming out of his abdomen. He had an episode of encephalopathy- which is always a risk when going on by-pass, but one that is often overshadowed when the surgeon tells you the mortality rate of under going open heart surgery.

That was just 7 weeks ago as I write this, and it still all feels like a bad dream.

My son is now back on the “path” as his surgeon puts it. A path for an improved quality of life, a longer life. He will be 2 in January and I can’t believe the amount of things he has had to endure- but he is still smiling, dancing to The Wiggles, and hiding his toys in the microwave- unaware of how much he has had to fight to be here.

I hold out hope that technology will improve to better the prospects for children like my son who are born with a broken heart. We have already come so far,. Gone are the days where children were left in institutions to live out their days- but still they are dying. A heart defect is the number one cause of death for children under one. I hope we can change that, so more and more people who start this journey can live it out with their children along their side, just like I am.

I hope anyone in the future reading this, looking down the path that I was, can have hope that our kids are amazing! They defy the odds every day, and prove themselves over and over, they are fighters, determined to the end.

Thank you so much to Yvette for sharing her story.  

Please, share your thoughts in the comments below and if you would like to share your story about the life as a parent, please email [email protected]. We look forward to reading them. 

Resources and References: 

Organisations like heart kids are raising money to help fund research into technologies, causes, and maybe even cures one day. They give support to families like mine who are affected by childhood heart disease, through the good times and bad.

http://www.heartkids.org.au

50% of CHD’s go undetected- 6 things to ask at your morphology scan-

http://www.chd-uk.co.uk/wp-content/uploads/CHD_UK_Echo_Leaflet_2.pdf