CHD Week: What to ask at the twenty week scan.
I have a few regrets. And this is one.
At our twenty week scan with Albie, we didn’t want to know if it was a boy or a girl, we just wanted to know that baby “Geo” (a portmanteau of Grace and Leo, the baby’s favoured names throughout the pregnancy) was healthy.
We watched quietly as the head, heart, limbs, spine and organs were efficiently checked. We watched as the blood flow, red and blue, moved about on the screen. We watched. Happy and emotional.
We were told all was fine.
We continued with organising a planned homebirth of our decidedly healthy unborn baby. It was only during the labour, when the baby’s heart rate dropped shockingly low, that we transferred to hospital and our Albert was born. His heart condition was diagnosed a few hours later.
And so it all began…
If he had been born at home, he would have died. Not straight away, he possibly would have just appeared as being a very sleepy baby, but probably over the first days, as his ductus arteriosus closed, which is this amazing part of the heart required in-utero that seals up on birth, he may well have passed away.
I’ve not ever written that. I have said a few times. But I know I have thought about it many. It makes me nauseous that that game of roulette played out without us even knowing. The stakes were so high.
So, I think about that scan, and I think about how it failed us. And how, in turn, we failed Albie. How, if we had known, we would not have been in a birthing pool in Houghton Bay. How we would have been at National Women’s for the birth, and how Albie would have gone straight to Starship Intensive Care. How lucky we were that he went into distress in labour. How skilful our midwife was at getting us to hospital as soon as it was noticed. How dicey his first hours were as they tried to work out what was wrong with him. How it was the first of many fights our boy has had to fight.
When we came to having Fred, we were put under the ‘high risk’ category and scanned at the hospital regularly. It was then that I truly realised that perhaps Albie’s twenty week scan could have gone differently. Albie had his pulmonary and aortic arteries entering the wrong ventricles, a valve almost non-existent, a large hole in the ventricular wall. It was, what Fred’s ante-natal sonographer, quipped one day, a ‘train wreck.’
I have to stop here and say, I understand that accidents happen. I know humans are human. And there is no sonographer anywhere who is going to detect everything. I don’t need to apportion blame.
For one reason or another, though, it was missed.
It was at this point, that I gave the DVD of the scan back to the radiology clinic to review. I wanted to know, knowing what we know now, whether his defect could be seen. They kept it for an inordinate amount of time. When we requested it back, it came back with a short, very carefully worded letter. They thanked us for the opportunity to review the DVD. They were going to change practice so that the heart would be checked on later scans too (Albie had scans at 22 weeks, after a car accident, and again at 41 weeks, but the heart wasn’t checked in either of these scans). There was no mention of whether they could see his defects or not.
And they included a $50 voucher to a toy store.
I think it is this that made it hard to make peace with. We didn’t want a voucher to a toy store to placate us. We wanted to know whether we could have avoided endangering our son’s new life.
These events, cached in my memory, have taken such a long time to seep out. It is a story that is still thickly coated in guilt and remorse. As much as I know it just doesn’t matter anymore, how I wish that we didn’t try home-birthing Albie when he was going to require such critical care. We put him in such danger.
I wanted to write this post because I wish someone had told me that I could have played a part in that 20-week anatomy scan. I figured, rather wrongly, that I was largely passive in that process. I wish I had known that I could ask the sonographer that day some questions about the heart. And if I had, that maybe she would have looked a little more carefully, that maybe she would have slowed down and maybe she would have seen that our lil’ guy needed quite a bit of help.
There are six questions. Six, simple questions to ask.
It seems overly cautious perhaps, but 1 in 100 children are born with a heart defect.
So if you, or anyone you know is expecting, send them this and encourage them to ask these questions.
I wish I had known to.
(PS. It might come as a surprise to you, that philosophically, I am still very much pro home birth. Or at least, very interested in hospitals becoming environments in which women can birth as naturally as possible. But that is a different story.)