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Cardiac screening for new babies – agree or disagree?


I am writing this blog as this issue is very close to my heart – and my girls hearts – literally.

Why?

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.

Madison was:

  • 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.

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Pregnancy may be natural, but it doesn’t always feel that way!

“Millions of women give birth every day, it’s completely natural!”

Oh, if I could get a cent for every time this had been said to me since conceiving my first child 15 years ago!

Even though pregnancy is completely natural – sometimes it just feels completely unnatural! And I’m not using the word “unnatural” in a negative context – I’m using it in the sense that pregnant women often undergo so many physical and emotional changes that it is outside of their “norm” as they experience the various changes to their bodies, their lifestyles and their emotions.

 

 

 

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MediStori is a perfect sentimental and practical gift for new parents

Nowadays, more and more of us are on the look out for unique gifts to give to a parent when a new baby arrives on the scene. The market for personalised clothing, pictures, story books, blankets etc. is at an all time boom. But one thing that has never gone out of fashion, even with all the technology on the market – are baby keepsake books.

As a mum to three daughters (and another baby on the way!) I loved these little memory books – almost religiously I would fill in all the important dates – the time they were born; their first haircut; taking their first steps; their first birthday. I would put photos, letters, hospital bands, their first tooth inside – every moment precious to me, a new mom.

Admittedly however (and I hate saying this!) the book which got the most attention – was that for my first born! 

With all the best intentions in the world to keep my second and third children’s booklets filled in and up to date, the reality was, the amount of time I had to devote to filling in memory books dwindled as time went by. I instead devoted this time to my girls needs. This seemed more important to me than filling in a book! My priorities had changed.

But I’ll tell you a little story that may resonate with other parents…

I had thought I had got away with not completing all of their books until one day my youngest, who had just turned 10, said she was doing a project in school about her baby years. I started panicking – her baby book was nowhere near as full as my eldest or second daughters – immediately the guilt kicked in. So before she got her hands into our memory drawer, I quickly started adding random dates and pulling photos from albums to put into her book. I even used different colour pens on the pages so it would look “real”.

Thankfully, my little white lie and fast thinking worked and the crisis was diverted – that was until my middle child decided to go look at her own book and I had to go through the whole process again. The joys of parent hood!

Now, I don’t think I’m the only one out there who has experienced this – and if I am, slap on the wrist for me – but I’m sure this is a reality for many. With all the want in the world to capture precious milestones, life gets busy: sleepless nights, school runs, housework, jobs, bills to be paid, homework and play-dates, to name but a few – a memory book is the last thing on our minds; never mind printing off all the photos stored on our smart phones! And truthfully, the books were mainly geared up to about five years of age so as they got older, I simply forgot about them.

But this is the thing – I learned the hard way how keeping track of a child’s milestones is actually very important. 

No parent ever thinks that their child could become sick – and nor should they – but when it does happen, that’s when we realise real life health records are needed. It didn’t even take a serious illness for me to realise this. I recalled how a simple trip to the emergency department threw me off and made me think: “I wish I wrote that down somewhere”.

Taking my first born as an example, at the age of seven, in 2009, she presented to hospital with a rash, vomiting and high temperature.

Upon arrival, I was asked questions like:

“Did she have a normal delivery/what weight was she at birth?”

“When did she crawl/eat/walk/talk?”

“Did she have all her vaccinations?”

“What operations, accidents or illnesses has she had?”

“Did she ever have chicken pox or measles?”

“When did you last give her paracetamol?”

With one child – this may be easy to remember – but add a few more to the mix and things can get quite blurred. Add the worry of having a sick child along with the tiredness of being up all night, and this makes things even more confusing.

And the thing is, these are questions are asked by most paediatricians, even for the most minor of illnesses and viruses.

Then came the next round of questions:

“Is there a family history of a, b or c?”

“Have your other children a history of…?”

“Have all your other children had up to date vaccinations?”

“Have you travelled abroad or visited other hospitals in the last two years?”

The list went on and on. I had no clue if I was giving the right information or the right dates for the right child – truthfully, and guiltily – I was winging it. Thankfully though, my daughter ended up being discharged, diagnosed with a 24 hour virus and she got much better over the next few days.

But the experience of feeling like a mom who didn’t remember her children’s medical history stayed with me. 

Wouldn’t it have been fantastic to have had a proper medical history book that could not only capture memories of milestones, but also of important health history? Especially in an emergency situation.

And that is what MediStori is.

MediStori is a modern and personal memory book where you can add sentimental photos, important milestones and memories of you or your loved one – while also tracking important medical history too. Parents can also store details about the pregnancy and other family’s history, and there’s even space inside to write a little letter to your newborn.

Over 50% of our customers buy MediStori as a gift for a new baby – many of these customers are actually grandparents. They often tell us how they wish they had kept a log of their own children’s health history, but hadn’t, which is why they were buying MediStori for their grandchildren.

MediStori is not something that should be stored away in a memory drawer for taking out at birthdays or “school projects”. It is an all in one family organiser, allowing parents keep up to four separate booklets for each family member inside – it is a diary which can help parents be grateful that they “wrote that down somewhere”. There’s also storage wallets for hospital/GP letters and results, so if a parent doesn’t have time to fill in the book, they can leave the letters inside.

Over the years, many new parents told us: “I will definitely remember everything about my child” so a number of years ago we ran an interesting focus group and asked new parents (children under one years of age) to sit alongside parents of teenagers (over 12 years of age).

We asked the new parents if they knew when their child was vaccinated or when their next one was due. All of them were able to answer almost immediately. We then asked the same question to parents of teenagers – 92% of them had difficulty remembering if their child was fully vaccinated and weren’t sure if their child was due any more in the future. This statistic stayed more or less the same as we asked questions about childhood illnesses, such as chicken pox or measles. One parent told us that her oldest child was travelling to the USA for college and they were required to have a full history of vaccinations, illnesses and accidents – the poor mom was at her wits end trying to pull all the information together. She had pulled out her baby memory book for him, which had helped her somewhat put the pieces together, but she made a statement which made many of the group laugh – she could hardly send her 19 year old to the USA with a blue ribboned baby book full of photos and first haircuts!

Another mom told us how when she was pregnant she was asked questions regarding family history of preclampsia and gestational diabetes, but her mom had past away when she was young so she didn’t have any of this information to hand.

This really opened eyes for the new parents in the room, and most of them started thinking differently about how they logged information about their child, and their family. It also opened the eyes for the parents of teenagers – they had completely stopped tracking any information about them.

You see, unlike a newborn memory book, MediStori is not just for babies – it is a booklet for life – and can be started at any age: from teen years, right through to old age. It is not a “babyish” looking book either and doesn’t come with pink or blue ribbons – meaning that when the child grows up they won’t be embarrassed if they need to bring it with them to health appointments, such as was the case for the child going to the USA. But we know that photos and precious family memories are just as important as medical history, so that is why we incorporated these features inside it, with loads of space to add personal, non health related milestones and memories.

Much like a memory book too, MediStori can be handed down through generations.

I know many might think  – we don’t need a health organiser – we’re not sick.

We are often asked: “Will I be insensitive to a new parent giving them such a gift?”

No, not at all. As an expectant mom myself at present, I would definitely prefer the practical gift over the sentimental. And the good thing is, MediStori combines both. Many parents who have received theirs, love it.

 

Leonora O’Brien: Mum, Pharmacist and CEO of Pharmapod uses MediStori for her beautiful new baby girl Fódla.

 

 

Colleen Cahill (11) pictured here with her own decorated MediStori. Her Mum Rachael finds it very helpful in managing her health history.

 

 

You see, health is not about illness, it is about wellness. It is part of our every day lives and when we are going through good health, we rarely think about it. But it is the times when we are not feeling so good when we may need a helping hand to help get ourselves or our loved ones diagnosed or treated.

We may need a helping hand in gaining a little bit of control in worrying situations.

Time is everything when a child is sick and having important information to hand can be crucial.

And giving that gift to a new parent can be invaluable.

“Why not pass down more to our loved ones than just photo albums?” 

 


To buy your own MediStori for yourself, or as a gift for a loved one click here to shop now

To see testimonials and endorsements about the MediStori click here