Stories from the heart – The Hearty Life

Throughout Heart Month, I’ll be sharing various stories from heart families about their experiences. Today’s post is from Mary who blogs over at The Hearty Life.  Mary’s third child Poppy was diagnosed with a CHD at her 20 week scan and sadly was stillborn at 40 weeks.  Thank you so much to Mary for being willing to share Poppy’s story.

Up until last year I had never heard of Congenital heart disease, and it also became a new term used in our family and amongst friends. I’d never heard of hypoplastic left heart, coarctation of the aorta or that it was even possible for a baby’s heart to be formed with the arteries in the wrong place. Why would we? Our family all have healthy hearts, our babies have all been healthy.. like most people we lived in our healthy baby bubbles oblivious to these conditions. We saw our 20 week scan like most other people; an opportunity to see our fully formed baby and find out if it was pink or blue. But what happens when your baby isn’t fully formed, what happens when the room is so silent you know something’s just not what it should be? How do you respond when the sonographer is hovering in the same place and becoming more and more shifty?

We went for our 20 week scan, excited like any other, after about 10 minutes or so I noticed there seemed to be an awkward silence, when I asked if everything was okay she said “I think so, I’m just going to get another opinion”. If you are not familiar with scans, its never good when they need another opinion. It turned out it wasn’t good, we received a referral to the cardiologist team at LGI as they couldn’t make out all 4 chambers of the heart.

I walked into the cardio scan adamant that everything was fine, our baby was obviously just in a bad position – we already had 2 healthy kids so of course it was going to be fine wasn’t it? I couldn’t have been more wrong, we were taken into a small room with leather sofas and tissues (again this usually means bad news) and were presented with this image:

You don’t need to be a heart specialist to see this looks far from the hearts you see in text books, not to mention her heart was also on the right, not left (dextrocardia – have you heard of that? no we hadn’t either). All together our little girl, now known as Poppy, had CHD, an umbrella term for the 7, yes 7 different heart defects she had. She was duct dependant meaning they only had hours to act after birth with an IV of prostaglandin to keep her alive! With all this we were asked if we wanted to terminate.. terminate?? Can’t this be fixed? I thought, can’t we have our baby and see her grow up?? Without question we said we wanted to continue, which would mean 3 open heart surgeries before the age of 5 (the first within 5 days of birth) and these would only be palliative – she would never be a healthy kid! IF she survived these then her life could be prolonged til mid-late teens. Tears streamed down my face and my own heart broke. I looked at Megan our boisterous almost 2 yr old and just wept, you know that kind of crying where you can’t hold it in? Within a couple of days our lives were completely changed – how could I say goodbye? How would we deal with putting her in the hands of surgeons never knowing if we would see her again? How do you live never knowing if its your child’s last day? That is the reality of living WITH CHD. The next few weeks were more scans, more fetal medicine appointments, specialists and building a picture for the surgeons for after birth. Each report reminded us how fragile our little girl was. At the time I was teaching baby massage and yoga, sitting in class watching new mums with their babies was so painful. Every time anyone asked or commented about my pregnancy there was a massive pause as I wondered what to say and where to begin.

Unfortunately for us Poppy’s CHD was only half the jigsaw, the other pieces included CDH and Trisomy 18 and at 40 weeks she passed away and was born sleeping. I can never take for granted a 20 week scan, that because you have one healthy kid others will be too. Our diagnosis, plans and talks turned out to never be a reality, but for many families this is their reality, they sit for weeks in a hospital as their newborn recovers from open heart surgery, they have to be at every party in case someone knocks into their kid and causes damage to the scar, they worry when they go to school if the phone will ring and have to head to hospital. Their kid takes numerous meds to help them live a normal life, a simple cold can hospitalize them, this is reality for CHD families. I hope our experience has opened your eyes, has helped you see that life really is VERY VERY fragile!