I am really worried about my baby - any ideas please

[mummytopebs]

I have posted before re my dd who is now 4 months. Since she was born her left hand has always went a blueish colour, when she was 6 weeks old her left hand and arm up to her elbow went black, she was admitted to hospital and had a heart scan which showed up no abnormality so was put down to immaturity in system.

The discolouring seemed to calm down a bit for around 6 weeks, but the last week it has been terrible again. It is no longer just her hand her left foot changes colour and more worryingly on saturday her whole body was kind of a grey colour. The last 3 mornings when she has got up her feet have been white, you press her foot and it doesnt change colour because it is that white. Today her left hand and arm has been blue all day and her hands have been freezing, she has now pinked up again.

I took her to the gp last week who said it cant be immaturity now so has referred her to a bigger hospital, it was our small hospital that discharged her saying it was an immature system, my gp has said that there is no way the blackness could be an immature system.

I have photos on my phone showing all these colour changes and the gp said they were horrifying. So we have an appt in 3 weeks at the bigger hospital but i am concerned as her arm and hand was the blue colour for around 4 hours today, with hindsight i should have taken her to a and e but would have had to take her to our small hospital who discharged her in the first place. I am now sat looking through the pictures and i am reaaly confused what this could be or where do i go from here

mummytopebs - glad your holiday was uneventful.

dd's heart problem is pretty rare but a symptom of it was that she went into congestive heart failure. I always hesitate on this type of thread as I would never ever want to throw another mum into complete panic. It's hard to mention a heart rate problem to a parent, when you haven't seen the baby but the symptoms ring alarm bells. As you've discovered via google your dd does have some symptoms of CHF; sweaty, poor weight gain, puffiness, blue/mottled and worse when lying flat. But I also agree though that it could be a reflux thing or a heart rate issue. What's her chest like?

Congenital heart conditions are quite often picked up between 6 weeks and four months, particularly ones that don't cause cyanosis (blueness) immediately after birth. Basically this is because the fetal circulation takes some time to change fully and it isn't until the pressures in the heart 'normalise' that problems begin to show up. It was why I initially asked about the BP being done in both arms (or all four limbs) as that can flag up some heart problems.

When are you going to the cardiologist? I would write all the symptoms down and yes mention the calcium thing.

dd is 16 now and does remarkably well after a difficult start

We go to the hospital next Tuesday, it cant come soon enough for me. I was scared last night, when she was having her night feed her right hand swelled up to double the size of her left hand, she looked deformed, it was awful.

How old was your dd when she was diagnosed and how was she diagnosed? DD had an ultrasound on her heart when she was about 9 weeks and her left hand and arm went black, would chf have showed up on this, or are other tests needed?

When dd had her bp done it was 100 on legs and 95 on arms, is this ok? Her chest is usually ok but sometimes she breaths from under her ribs and she always pants if playing or when stood up. She makes a funny whooping noise when asleep as if choking sometimes and this is scary.

I am glad your dd is doing well x

dd was 14 weeks old. I doubt it would be helpful to tell you the whole sorry tale - suffice to say that we were badly let down by both our GP and local hospital. The important thing being that she did get a diagnosis eventually; a chest x-ray revealed an extremely enlarged heart and subsequent ECG and echo confirmed the suspicions. We'd been in hospital a number of times because of her very poor weight gain and other symptoms. She fell from 98th to off the bottom of the chart over the 14 weeks.

Who did the echo initially mtp? Has it been reviewed by a paed cardiologist? The initial stages of CHF may not be clearly visible on echo but would be as it progressed, showing both as an enlargement and in the measurement of the heart's output.

Where are you seeing the cardiologist?

The BP thing sounds OK - although I have no idea about the numbers in relation to a baby, when they do the four limb BP they are looking at discrepancies between the limbs. The swollen hand thing does sound really odd and certainly not a normal thing even with chf. It does sound scary for you both though and I can well understand why you want to get this appointment done. Sometimes it's just a relief to find out something is wrong isn't it? Which is an odd thing to say really but otherwise you just think you're going mad with it.

I really hope it's something and nothing so to speak and is easily solved.

I am just that you're still not further forward.

You poor thing. You're being remarkably patient but you must wish you had a time machine to jump straight to appt day. Just want to wish you luck.

The echo was done by our local hospital, and my gp have referred to a larger hospital James Cook. The echo was not reviewed by a cardiologist just a doctor on the childrens ward.

Your dd symptoms sound much more severe than dd she has dropped 2 lines on her weight chart but not lost weight. It is all just so baffling really. Was your dd the blue colour all the time or just now and again? I dont understand dd cos she has only changed colour in the limbs the once today, i make myself feel guilty cos i am willing the colour change and other symptoms to happen when we have our hospital appt next week

I am glad i have the photos of all the different symptoms ie the colour changes and the swelling because some of the times she is totally 'normal'

Are you in Teesside?

Yes

Not that is of any help to you but I'm originally from Eaglescliffe and thought surely there can only be the one James Cook hospital!

Just read your thread and although I have no advice or experience I just wanted to say I am so sorry you have had such a worrying time, I can't imagine how scary it all must have been. Hope you get to the bottom of it soon.

It is supposed to be an excellent hospital, i am hoping they will shed some light

That must be really worrying for you. Have you tried measuring her body temperature when her colour changes?

mummytopebs... i know its a strange question but are you white british or other.

is her urine a normal colour and does her breath smell peculiar at all. Hope you get some answers soon..must be very worrying for you.

mummytopebs - you may already be doing this but I would keep a diary of the next few days and take it with you along with your photos. They often don't perform when you need them to, I know what you mean about that.

Note down when she has an episode, what she is doing (feeding/crying?), her position (upright/flat?) colour in the limb and generally (blue/pale/mottled?) and other observations; her breathing, is she hot/cold, sweaty etc?

Thanks for all the ideas and kind thoughts. I hadnt thought about measuring her body temp when it happens but i will try next time she changes.

Alypaly i am white british, her urine looks normal colour but she doesnt wee loads, not sure what a babies breath should smell like hers smells kind of sweet and she constantly dribbles.

Saggar i am doing a diary, she has been poorly today she has a cough and a snotty nose, temp and bein sick and she has slept most of the day, her colour hasent changed extremly just when laid down getting nappie changed her hands and arms up to elbows immediatly mottle, she has been very sweaty all day today but assume that is due to the temp.

Saggar so was your dd not a strange colour all the time?

have you got any pictures of babys skin? Does it ever look like thisdermnetnz.org/vascular/livedo-vascularis.html

aly's link is quite interesting mtp. It mentions hypercalcaemia towards the bottom of the page.

dd was normally pink 'til around 6 weeks after that she got gradually pale/grey and later mottled periphally (a bit blue around the edges). She was never truly 'blue'; her Sats were never dreadful either which even the cardio couldn't quite get his head around considering she was so sick by the time he saw her. She was extremely sweaty/clammy even though it was winter. They all present differently though, even two babies with the exact same condition.

Aly thanks for the link she doesnt look much like that, her mottling is more when i lay her flat and the mottling starts from her fingers and creeps up her arms and the same on her legs, starts from her toes and gradually creelps up her legs, she has mottled acroos her chest and shoulders a couple of times.

Saagar that sounds like dd she was a pinky colour to begin with then turned a very pale colour, sometimes she looks ashen and grey and like you say blue round the edges. Her feet are white on the morning and dont change colour when you press them they are that white. When she is asleep she is white. She is usually a blue colour round her mouth and when she crys her tongue goes a blue colour.

It was interesting that you thought chf might not be picked up in the first stages, i am hoping they do anouther echo on tuesday and also a chest x ray.

She has been panting breathing more than usual today but i assume this is because she has a cold

Well, like any scan it depends on the skill of the technician and a wriggy baby isn't exactly an easy target. I'm sure the cardio will do his own scan.

You say she doesn't wee much? I'm sorry - it does all sound a bit iffy heartwise - though it's odd she's obviously blue but with OK Sats. If her breathing gets any worse than usual don't wait for the appointment, go to A&E. TBH I'm a bit worried for you. I'm no expert (other than through my own fairly grim experience) I think you should speak with your GP again tomorrow.

When they have done her sats it has always when she is just the pale colour not the blue or mottled. Didnt realise weeing would have anything to do with the heart!! I am not sure how much a baby should wee really but know i dont change her nappy as often as i used to her sisters, she also only poos every 2 days - could this be anything to do with heart? Except today when she has had diahorrhea and sickness.

If she is still panting tomorrow i will take her to gp i have just done her obs and pulse is 150 a minute, resps 35 so i think that is ok

poor pebs

Is she breathing from her tummy? You should keep an eye on her throughout the night - though suppose you will anyway.

I have been sleeping with her with her head on my shoulder so that she is not laid flat, i will be watching her more closly tonight though

I'm not great on my geography or paediatric cardiology but are you anywhere near Newcastle??It is sounding like a circulatory disorder, and I think you really need to get the opinion of a paediatric cardiologist. The Freeman is your nearest paed.cardiology centre. As Saggarmaker has already said, it's difficult to get a good scan on little one, and it needs a specialist eye to be able to identify any problem. It sounds like she needs a bubble echo to rule out any VSD, and I would suspect they'd want to do either an angiogram or aortogram to look at the cirulation around the heart, and look at where the blood is flowing to out of the heart. I really hope you get some answers soon, and that your lovely girl is back to full health soon.

Yes, I hope you get some answers. It must be awful, you must just want to cuddle her all the time.