Why was my DS born with pneumonia? And why can't I move on? Long - sorry

[oysterpots]

DS is 10 weeks now and the picture of health. I had a textbook labour and almost enjoyed the birth itself, but when DS was less than 24 hours old the paediatrician examined him and said she was concerned about his breathing. She referred him to a consultant who said the same, and whisked him off to intensive care for an x-ray, blood tests and a lumbar puncture for spinal fluid tests

X-ray came back as showing an infection which turned out to be pneumonia. The staff were all really vague - didn't even really give me the diagnosis directly, mentioning pneumonia in passing leaving me to say 'so is that what's wrong with him then?' - and no-one could tell me why he had it.

Have since read up on the internet that diagnosis before baby is 48 hours old means the pneumonia would have been contracted during pregnancy or birth, rather than post-birth. One of the consultants I asked said that they couldn't tell whether the pneumonia was bacterial or viral unless they did a sweep of DS's lungs, which I didn't really want to do. And not sure what that would even tell us really.

So. Am left trying to work out what it was that caused the pneumonia. There was a point about 2 or 3 weeks before I had him where I was convinced my waters had leaked. My slightly batty midwife said it was either discharge or urine, even after an internal examination, and that my membranes were intact. Maybe she was wrong? All my instincts tell me that something had leaked.

Also, I asked for a Group B Strep test at around 37 weeks, which came back negative. But according to the GBSS website the NHS test is notorious for creating false positives and false negatives. I've since read up more about Group B Strep and third on the list of diseases that can be attributed to it is pneumonia (after meningitis and septicemia). Which makes me think that could be the cause. Is there any way I can be sure?

My DH says I'm dwelling on this too much and that I should be happy my birth experience was so good and that DS is now thriving. But I can't forget that I had to stay in hospital for a week wheeling my DS to SCBU every 12 hours for intravenous antibiotics. It was a horrible, horrible experience, and one I'm really determined not to repeat if I have another child. So what can I do? Any suggestions?

Have no idea about your questions but as someone who has niggles about her son's birth 6.5 years ago, I would say you need someone to go through your notes with you and explain things to you.

I think you need to go and speak to the consultants at the hospital and get as full an explanation as you can

unfortunately in medicine there is not always an answer to why things happen so whilst you are looking for a nice neat checklist I doubt you will find it

much of modern medicine is trial and error, one doesn't appreciate this until one is faced with it .. before that day you always believe that symptoms = diagnosis = medicine / treatment choice

I personally think that you do need to get past this but you have had an extremely traumatic time and potentially once you've met with the consultant you might consider some post-traumatic stress counselling to help you move on and appreciate what you have now rather than what has happened

good luck

Try this website

I can understand why you're finding it hard to get past. You expected to have a healthy baby and you had one who was poorly. And nobody's giving you any information about it. That's a very difficult situation. Talk on here about it, see if you can get help through the site I linked to and cuddle your little boy a lot (I'm sure you do that!).

One thing I would say is don't fret too much about it happening again with another baby. Get past it happening with this baby first and in doing that, you'll see how likely it is to happen with another. Thinking of you.

Just to add, I have had 2 more children since then and both are fine. No repeat of what happenend with their brother and i had extra scans with number 2.

Oysterpots, maybe you can try and get your and ds's notes from the hospital? I can sympathise with you - ds was born at 34 weeks and spent 7 weeks in SCBU with breathing difficulties. He is now 14 months old and I am only just starting to feel better about it; I have sent off for our notes (in July! - haven't had them yet) and started feeling less panicky as soon as I had sent the form off. He is completely healthy and has been for ages, people would keep saying "oh but he is fine now" and imply that I should just get over it and forget about SCBU, but I found it very hard.

Also, I'm not a medic, but I was told ds had pneumonia when what they actually meant was he had wet lungs (he was aspirating milk) rather than an infection. They gave him antibiotics in case the wet lungs became infected. (Think x-ray would only show fluid on lung, blood test would show infection, but could be wrong!) Could this be the case with you? I think you really need to get hold of your notes and maybe ask gp if you can see the consultant at the hospital for more of an explanation. Don't leave it as long as I did!

Incidently, my dh didn't understand how I felt at all and was really surprised when I blurted it all out when ds was about 9 months old (we were at the hospital for another appt and were goign to take ds into SCBU to say hello, but I felt physically sick and couldn't go through the door). I hope you get some answers soon and start to feel better about it all.

I think it's perfectly natural to want to understand, to the best of your ability, what happened and why. I'd be the same and I'd keep reading and trying to find out what happened until I felt I'd done all I could. It's a sensible approach.

Just ignore people who tell you to let it go and move on. They don;t understand and are trying, misguidedly, to be helpful.

Hi oysterpots (i think we've "chatted" on BF boards)

You should be able to arrange to discuss your notes through the patient liaison service at your hospital.

I had a horrible induced labour with DS 5 years ago which went on for nearly two days and ended up in a c-section. I was left feeling confused and dazed by the whole experience. The consultant came to see me on the PN ward as she had been concerned about me before I went into theatre, and I asked her what went wrong. she got my notes and went through it step by step, and helped me deal with what had happened. I think if I hadn't done that I would've been left wondering as well.

I think you need to do this, or it will continue to pray on your mind and potentially lead to depression and spoil your enjoyment of your newborn.

I'm glad he is healthy and well now

Oh, I'm sorry, I'm going to be one of those people who tells you to move on. It is quite possible that you baby contracted pneumonia due to medical incompetence, but you're never actually going to be able to get a definite answer. Re the group b strep, as far as I know there is absolutely no way of finding out now whether or not you had it, and it was active at the time of the birth.

You say that your baby is now a picture of health, enjoy him. You have more than enough on at the moment without worrying about what could have happened and why. Use the info you have to help you with future pregnancies and births, but forget about going over old ground. It no longer matters.

I was about to tell you to let it go - and then I saw spidermama's post!
But I do understand a bit as ds1 was born with an 'infection' - and thats as specific as it got - he had x-rays and antibiotics (with a splint having to go on his arm to hold it all in as they took many attempts to get a line in), and was monitored in NICU. They thought he had an enlarged heart as well at one point so investigated that, but it was fine.
What I remember about it though is the actual birth which was fine (was going to write great but thought that was a bit OTT).
Maybe if I had had a specific condition named I would have researched it like you did, but for me it was a case of 'he had something, it was treated, we're all fine'. It didn't cross my mind for the next 2 and in fact I had them at home.

As it is bothering you though you really should have a meeting with the consultant or whoever can give you answers.

Sorry to but in here, no personal experience of this, but a little professional knowledge of this area.

Firstly, make an appt to see the consultant or whoever you think most appropriate to talk things through. If this happens, take a list of things you want to ask, take somone else with you, and make notes on what is said.

You can access the medical records - contact the medical records dept and ask them for the form. They may well charge you, but this will be up to a max of £50. Alternatively you can arrange to view them for free at the hospital.

If you can't get to talk to the consultant, or you do and it doesn't answer all your questions, then you can put in a formal complaint. You write to the chief exec of the trust and outline what has happened and what you want i.e. answers to your questions. They have to reply within 25 working days.

HTH

just want to add

telling people to move on after a trauma is not actually that helpful.

if they could move on, they would.

trauma around birth is a difficult area, as it is hard to come to terms with what happened, when you feel like you 'should' be grateful that baby is fine now, you are fine, so what happened then doesn;t matter.

it does matter

being told it does not matter, is not hearing the problem and dealing with it

addressing it, getting answers, even if the answer is, there is no answer, is very useful and valuable.

it can be hard to enjoy a new baby and motherhood when there is a shadow of something bad hanging over you.

acknowledging it is healthy and helps you to move forward.

i so feel for you oysterpots.

when my dd3 was born, all was good until we were being discharged. the doctor came to do 'going home checks' and found she had a heart murmur - cue being rushed to scbu for checks where they said her blood pressure was not normal (whatever that meant) she had three scbu nurses and two doctors all over her with wires poking out everywhere and it scared the living daylights out of me.
turned out it was a small hole in her heart, which is very common (i've only just recently found this out) and it closed by itself.

It changed me though, i was never a panicky mum before, but i couldn't let it go. i was convinced i was going to lose her and i was angry that the hospital hadn't explained things to me. it ruined the first 9 months or so that i had with her.

i do sympathise with you. Anyone who tells you to move on - i would personally ignore. they are not you, your feelings are unique and personal to you alone.

maybe you won't get all the answers you're looking for, but i promise you that the scary feelings and the anger will fade in time and you will move on from this.

good luck with the LO and i wish you the very best x

oyster - this must be very hard for you. like daisy - i have seen you on bf threads. as lula said - if you could 'get past it' - you would have. maybe you need to talk it out of your system - so you can make some sense of it for yourself? or maybe writing down all your thoughts/ feelings/ worries /questions around it. sometimes having it down on paper might help to stop it whirring round in your mind.
i really hope you get the answers you need. if you dont get the answers i hope you get the support.

xo

I'm going to be a combination of the two camps - dwell a bit, then move on.
Contact the Patient Liaison people at the hospital and ask to meet with the consultant. Explain very clearly WHY you want to discuss this - that it's just for your own peace of mind. Prepare your questions and listen to the answers. Believe the answers. Also, believe that sometimes crap just happens and sometimes you never get a full explanation. You just have to live with the consequences - which in your case means a beautiful healthy baby. Thank God.
Then, give yourself a couple of weeks of pseudo-immersion therapy. Talk and talk about it with everyone. Every time you tell it, it will get a little easier to deal with.
THEN PUT IT IN A BOX IN THE BACK OF YOUR MIND and get on with your life with your baby.
When baby is about 13 (as my ds is now), reminisce about how worried you were when he was first born, how sweet he was etc. Watch him run.

I sympathise. DS2 was fine at birth (37 weeks) but got very ill at 8 weeks and was finally hospitalised at 12 weeks after I had been classed a paranoid mum. I won't bore u with the details but we nearly lost him. About 9 months later I was really struggling with DS1 getting very angry etc and sought counselling before I lost it seriously with him. After 3 sessions I finally mentioned my experience with DS2 ( I hadn't thought it relevant) and she diagnosed post traumatic stress and encouraged mew to process the experience as I hadn't up to that point. I had 'got on with it' was 'happy he was OK' etc etc. It back fired. Do whatever you have to do to deal with what happened. Thats my advice.

I'm sorry if my post sounded harsh, I really didn't intend it to. When I said move on, I didn;t mean in it the context of 'get over it'. You've had a horrible frightening experience and it's important to work through it, like others have said on here. However I don't agree that you're going to satisfy your feelings of confusion and grief by making it a mission to find out exactly what happened and who's to blame. I think this would be counter-productive and unsatisfying as you are unlikely to get to the root of it anyway.
I apologise again for unsympathetic sounding post. I really hope you manage to find a way of moving on.
Best Wishes x