Breakthrough in diagnosis for Congenital Heart Defects

In the news today it has been reported that a currently little used test on newborns could help discover congenital heart defects. The test measures the oxygen levels in the blood and is easy, quick and non-intrusive. Got to be good. The study looked at 20,000 babies and it detected 75% of all critical cases (those that result in death or surgery within 28 days of birth) and 49% of major congenital heart defects (causing death without surgery within 12 months).

At present, ultrasound scans examine the heart antenatally and newborns also have basic cardio/ respiratory tests. Some of the stats above account for babies whose heart defects were uncovered via these existing methods, but the total number of cases discovered still represents an impressive increase.

However, what is personally interesting is that the oxygen testing wrongly identified some babies as having congenital heart defects, although I haven't been able to find exact figures for this.

When in SCBU, Tiddler was diagnosed as having PDA, VSD, and something else- memory hazy- I can hardly remember this- we had so much else to worry about I remember saying out loud that we would deal with the heart stuff later. Crazy really to think I said that but we really did feel as though we were taking an hour at a time sometimes.

On discharge from SCBU, we asked our consulant whether Tiddler's could be a self-resolving issue and he said most probably not. Happily, and to cut a long story short this is not the case and Tiddler has no heart problems- a Cardiac Echo when she was a month old confirmed this.

I sometimes wonder whether with advances in medicine we get a bit too clever for ourselves, in our case ignorance would have been harmless... we would never have known about Tiddler's heart problems as they self resolved. In pregnancy I also had scares as a result of ultrasound scans and all was fine. Don't get me wrong, I am no Luddite. I love the NHS, I am thankful every day for the medical advancements that have kept Tiddler safe and obviously I see how fantastic any improvement in the diagnosis of heart defects is. I just worry that people think its a panacea. I suppose though the benefits clearly outweigh the risks of mis-diagnosis. It is better to diagnose too many children including some incorrectly than miss a diagnosis altogether I suppose? We are fortunate that Tiddler's cardiac issues resolved and we know it.

Reflux and Weaning

After several intrusive tests and intravenous antibiotics, Tiddler's "dusky episodes" during the first 8 days of life were put down to Reflux. I remember the first time a Paediatrician said this I was very cynical and I will admit highly irritated. My newborn baby had stopped breathing for God's sake- how can that be Reflux? She had nothing in her tummy the first time it happened, how can that be Reflux? Anyway I was of course thankful it was nothing more sinister. We were "finally"* discharged with a diagnosis of "Silent Reflux" and a very daunting cocktail of medication at a user-unfriendly every 4 hours, 4 hours, 6 hours and 6 times a day.

We have always kept Tiddler's crib tilted (waste of a bloody good John Lewis glider crib, that!) and until very recently always kept her upright for an hour after every feed. I dont jig her about. She misses out on a lot of silly Mummy / Tiddler dancing :( Her medication has been tinkered with over time and she is now on a fairly strong medication once a day. (Omeprazole)

The thing about reflux is that its a condition that varies wildly but does seem to be exacerbated by teething / colds etc. Frustratingly it can seem that you are turning a corner and things are getting better and then you can be brought down to earth with a bang and whole lot of vomit!

Our Paediatrician had said originally we should wean at 4 months but due to Tiddler's low tone and inability to sit, as well as suspected Cows Milk Protein allergy we were then advised against this. Tiddler has had a rough couple of months health wise and so weaning has taken a back seat until now.

She has been doing really well with purees in the last couple of weeks, certainly enjoying an unprecedented hunger and desire to eat. However, she does seem to have a very strong gag reflex. This emerged in the first few days of weaning a while back and she gagged and vomited on a very thin puree of carrot. Since then, she has mainly coped with puree and we never gave her milk just before solids so as to make sure she keeps the milk in her! I am now attempting to introduce lumps and am finding that reflux is rearing its nasty head again :( This evening I gave her 1/4 of a tiny tiny Annabel Karmel pasta shell... she managed three quarters but the 4th made her gag and she threw her entire feed up. Now the saving grace is that Tiddler hardly seems bothered by this- its a silent evacuation rather than lots of tears and retching- just realised this is quite graphic, hope there are no vomit phobics/ people eating while reading this ! It is hard for me though- I spent quite a while preparing her dinner and then feeding it. To then see it all come back up again is dispiriting, feels like Reflux is back. I dont know how much slower we can wean her though as the lumps were tiny. Puzzled. Bloody Reflux.


* we had a lot of "final" discharges...

Errrr LittleM and Mummy becomes Tiddler on the Loose

Oops. I did google my proposed blog name, I did- I promise! However, I suppose I was a "bit tired" and anyway managed to overlook that there is a very similarly named blog. Hence the name change.

Tiddler on the Loose.

Same blog, same aims etc. I have chosen "Tiddler" as LittleM has been slow to gain weight and so is on the small side. Conversations have typically gone like:

Random: "awwwww a newborn" / " awwwww a tiny baby" / " awwwww how old?"
Me: " errrr no she is actually x weeks old"
Random: without a pause "Oh, was she premature?"
Me: "No."  If feeling kind I would then save said random and say "I know, she's very small" . Sometimes I add " Shes been pretty unwell"
Random: "Oh, I am sorry to hear that, is she all better now?"
Me: "No". They then squirm and feel generally awkward.

The other alternative is to lie, but that's not me. I haven't invited them to comment. Why do people feel the need to fill a space / silence with daft questions or comments? It happens so much! I know I have been guilty of it too... if only we could all think before we speak! One comment or two is ok but when it is literally every time you go out, it gets quite hard and the constant explaining is not something I have wanted or felt able to do. Hence my responses were less forgiving.

So anyway, she is a tiddler. But the tiddler has turned as she is eating enough for small people everywhere and drinking more milk than ever before too!