I am writing this blog as this issue is very close to my heart – and my girls hearts – literally.
Because I am a mom to a new little baby girl who has a cardiac condition.
Actually I am a mom to four daughters who each have had congenital heart defects.
ALL undiagnosed at birth.
ALL only diagnosed because I pleaded with health professionals to test them when I felt “something wasn’t right”.
Now I do not intend to scare monger anyone by writing this – I simply want to lay out some facts about CHD’s (congenital heart defects) and the importance of cardiac screening for newborns. I desperately want our health service to consider routine screening for all babies.
I also want all parents to be aware, listen and ACT on their gut instinct – because sometimes this is all we’ve got to go on.
But before writing this piece, I wanted to know what others thought about cardiac screening for new babies. So I asked people on my personal Facebook page. Ninety per cent of my friends said yes to cardiac screening, 10% said no. Within the “yes group”, many parents added “only if there was a family history”. From the “no group” many said their reasoning was because it could cause unnecessary worry and the tests could be invasive. There were also some comments about our health service not being able to resource such a service.
I have different opinions on each of these responses.
OPINION 1: “YES, but only if there was family history”
Did you know that many congenital heart defects have no known cause meaning that there is no evidence of family history of cardiac history? Did you know that one in one hundred babies born every year have a congenital heart defect [CHD]?
Did you also know that some cardiac conditions in parents do not present themselves until much later in life?
So in theory, if babies were only screened based on
a criteria of family history then many of them could be missed. And, in theory, the statistic is much higher if people are not diagnosed until adulthood.
Do I think babies should be screened only if there was family history? No, I feel all babies should screened. Because, as you will see later when I share my personal story, we had no family history prior to diagnosis.
OPINION 2: “NO, it could cause unnecessary worry”
This one baffles me.
How can the fear of potential worry override the prevention of a worse outcome for a child which could have been prevented? How can parents put their heads in the sand when it comes to knowing that their child may or may not have a health condition which in most cases can be treated early on? Or even know that their child has a condition but that it will cause no harm to them, as is the case with many CHD’s?
Every year, people get their cars serviced to ensure it is roadworthy and to keep them safe – why not do what we can to ensure our children are healthy to prevent any serious incidents which could have been prevented? Screening does not cause unnecessary worry – a child having undiagnosed symptoms over a period of time however, definitely does.
OPINION 3: “NO, the tests could be too invasive.”
Many people may not be aware but the basic tests for cardiac screening are probably the most non invasive of them all:
- A little sticker (like a plaster) can be put on the toe/finger of a baby to check their oxygen levels
- A blood pressure monitor (like an adults) can be put on the baby’s arm or leg
- An ultrasound called an echocardiogram looks inside babies heart (this scan is exactly like what women have done when pregnant)
More tests may be needed after these – but these are usually only if the baby is symptomatic or a cardiac issue has been found.
Additionally, every single baby born in Ireland has the highly invasive and painful heel prick test done. “The Heel Prick Test screens all newborn babies for six rare conditions.” Cardiac defects are far more common than these rare conditions, but yet aren’t screened. And the heel prick test is painful on baby, is invasive and requires trained health professionals to visit the home to provide the screening. I am not saying it shouldn’t be done – I’m just putting it into perspective.
OPINION 4: “Our health service couldn’t resource it”.
See point made above re: heel prick tests. Of course our system could resource it, if they put their focus on it.
For this part, I will share a personal story to show how many times I unnecessarily visited health services, just to get answers – when, if the screening was done in the first instance, this wouldn’t have happened. A small fortune could have been saved. My mental health could have been saved.
“My third daughter, Mackensie, was 12 days old before she was diagnosed with significant congenital heart defects. We had never had any health issues in our home prior to her arrival – my two eldest daughters were always healthy, as were myself and my husband – so I was quite ignorant when it came to knowing what signs to watch for. But I knew something was wrong with Mackensie. I couldn’t say exactly what it was, but I felt so uneasy that it warranted me calling the health nurse every other day and bringing her to the Emergency Department three times before she was 12 days old.
Every time I was told there was nothing wrong.
Every time I was told I probably had postnatal depression.
Every time I told them that there was something wrong with my baby.
I was even questioned about the possibility of me having Munchausen Disease (a condition where parents make their children sick on purpose for attention). Eventually I went to my GP (he was on holidays prior to this) and upon him listening to her chest he sent us straight to a different hospital – this is where she was diagnosed with three holes in her heart – PDA, ASD and VSD – and she was immediately sent to Crumlin. She was started on numerous diuretics (heart medications) and not long after had to be tube fed before her heart surgery as she could not gain weight. Thankfully over the next year, she recovered very well.
But the impact the whole process had on me was long lasting.
I kept thinking: “What if I hadn’t kept fighting? What if I’d given up asking? Would she be here today?”
Soon I couldn’t tell the difference between worry and gut instinct. I was in a constant state of panic. I had been diagnosed with Post Traumatic Stress Disorder (PTSD).
In the following years all sorts of unusual health issues arose in all of us. Though scared of pushing buttons too much, I still fought all the way to have all my girls hearts tested properly. My eldest suffered terrible headaches and sporadic blood pressure – she was then diagnosed with a hole in her heart called a PFO. Now this condition is not normally anything to be too concerned with, except my husband suffered a TIA (mini stroke) at the age of 42 and only because we went to a private hospital was he diagnosed with the same hole in the heart as her – and we were told that it caused his stroke. My second girl then became very ill after a viral infection – she was not only diagnosed with Juvenile Arthritis but also with PVCs and PACs (arrhythmias of the heart), and now, tachycardia. Again, she wasn’t the only one with unusual rhythms in the heart – I myself was diagnosed in with bradycardiia (slow heart rate). I was subsequently fitted with an internal heart monitor.
That meant all five of us had various heart conditions. None of which were known before 2006.
So you can imagine, when my fourth little baby came along, that it would be obvious that she would be scanned at birth for any heart defects. But no, this didn’t happen. Not because the health professionals didn’t feel it was necesssary – they did – but simply because of an administration failure. The letter from her paediatric team requesting an echocardiogram (heart scan) did not get to Crumlin or Galway. It took my GP to write to both of them to get the appointment.
It took a full 8 weeks into Madison’s life before she too was diagnosed with a hole in her heart.
Deep inside me, I knew she had it. I didn’t want to believe it – but all the symptoms were there. Symptoms that are so similiar to reflux that anyone else may not have known.
- Taking a long time to feed (2 hours+) – often falling asleep during feeds and only taking little often
- Not gaining enough weight – falling two percentiles below where she started at 3 months old
- Sweating – a lot – especially during feeding or crying spells
- Becoming blue around her lips, her tongue and fingernails – even when feeding
- She showed signs of rapid breathing, sometimes with nostrils flaring
- Coughing intermittently both before and after feeds – sounding like a “wet cough”
Madison was diagnosed with a hole in her heart (PDA). Her older sisters’ symptoms also included sleeping nine hours at a time (newborns should not do this!) and no weight gain at all, so Madison seems to be faring out a little better and we are now playing the “wait and see” game – hoping against hope she won’t need heart surgery. Madison also has silent reflux and a significant stridor which makes things more complicated so we have to log all of her feeds, have her weighed weekly, note down all her symptoms and increase hygiene regimes as she is at a higher risk of getting endocarditis (infection of the heart). At three months old she still feeds every 1 – 2 hours at night, and constantly feeds throughout the day with little to no sleep. This routine works for her though and thankfully last week we saw a slight increase in weight.
This particular hole in her heart can cause blood to leak into her lungs so I have to watch her breathing closely. She wears an apnoea monitor when she sleeps.
And that is where we are right now.
I know so many people that have told me stories about their children being diagnosed “by accident”.
Some of these people sadly lost their children because of it. I also know families that have lost adult family members due to undiagnosed heart conditions. This is what is so scary – even more so because it could possibly have been prevented.
So I do not understand people who do not think screening is a good thing for babies.
It is hard to “fight” to be heard, but stick with it if you’re gut is telling you to.
I hate the feeling that health professionals may think that I am “a neurotic mum” or tell me not to “mollycoddle” her and to force feeds into her in 20 minutes – if an adult has reflux/heartburn they can only eat little often also, so why is it any different for babies?
Had all of my girls been screened at birth – we wouldn’t have to had to figure out what was wrong- or use up so much time in emergency departments or calling to our GP. I wouldn’t be riddled with feelings of guilt and being a failure as a mom because my baby wasn’t gaining weight. I wouldn’t have the anxiety I have now. I would probably trust all health professionals opinions – but now, sadly, I don’t. Even with our family history now, it is still near impossible to get genetic testing done, which I feel is essential for my children’s futures.
Many countries across the world are starting screening programmes – many of which have shown to have little negative financial impact on health services, for example in New Jersey: “The CCHD screening program in New Jersey was also found to have minimal impact on hospital resources. On average, CCHD screening took 9 minutes and cost $14 per infant. Overall hospital costs were low as well, since only a small number of newborns required clinical exams and diagnostic testing.”
Either way, it shouldn’t come down to money – after all, can a price be put on the life of a child?
I would love to see Ireland take a stance on this.
I would love to know your thoughts on this, please let me know in the comments below or through our many social media domains.
If you are concerned about your child please go to your GP, health nurse or local hospital. Please remember, there are many conditions that share the same symptoms, many of which are not serious, but all should warrant a check up by a health professional.
For more information about children with congenital heart defects visit www.heartchildren.ie
If you would to keep on track of your baby’s health history MediStori Personal Health Organiser may be able to help. Learn more here.