Undiagnosed Possible PTSD? My infant was in NICU

[Becca-17]

Hi
I had an appointment with my GP last week for a heart issue (SVT) and he's suggested I may be suffering from PTSD.

My child was diagnosed with a disability in utero but we chose to continue on with the pregnancy as we didn't deem the prognosis to be that bad.
When born however C ended up spending time on NICU and needed ventilation, surgery etc I can't actually remember much from that time, just that I was worried and tired a lot of the time. I was given strong pain relief so put it down to that.

When we took C home I felt something was still very wrong & breathing was becoming an issue. We took C back to hospital where we stayed for many, many months. Most of that time we were situated on critical care and regularly told or it was insinuated that C might die.
C was given general anesthetics on a semi regular basis, and lots of surgeries that we were told could result in death. Whilst we were in critical care the Manchester bombings took place & the unit took the most critically ill patients, we had already witnessed 2 babies die next to us within that time, and 2 older children pass too.
It was an awful time, & although I don't remember much of day to day life I do remember the feelings, the fear.

Finally we got C home and thought things would improve, but once again her breathing deteriorated and resulted in me finding C dying in her cot and needing to do CPR. C had more surgery and again we took her home. Since then C has improved dramatically, & then gradually gotten worse again.

I feel like I'm on a knife edge most days, & struggle getting support because I can only discuss it all very matter of factly, so I sound like I'm coping. If I try to explain everything C has been through I lose the plot & can't handle it so I simply don't. No one really knows what C went through, I didn't even discuss everything with my OH whilst he was as work because I couldn't find the words.

We still do not know if C will live to adulthood and I'm constantly fearing for the future.

I don't know if this is PTSD or anxiety but I think I've finally realised that I need help.

Thanks for reading, and sorry it's so long.

 

[Sideways]

First, I hope that after everything that you’ve been through together, C improves and you get to spend some really happy times together. Both of you deserve that.

This is still acute - so it’s potentially going to be difficult to diagnose. There’s a lot of potential illnesses that cross-over, including ptsd and anxiety (like you’ve suggested), but also acute stres disorder, depression...the potential list of suspects is actually quite long.

But there is good news. It may be that you don’t have a mental health illness. At all. That may sound like minimisinng what you’re going through. That’s not the case. What you’re going through? Is extremely distressing. And it makes sense that you’re having an extremely distressing response to it. That is normal, healthy even. For you to not be seriously effected by what you and lil C go through? That would be concerning.

Your GP, by saying “this might be ptsd, is essentially saying “this is potentially serious, it warrants further support, and it’s beyond my skill set”. So take that advice seriously and run with it.

Either way - illness or not - the advice is still the same. Find some professional support. Possibly with someone who has experience that also includes post-partum depression (not because that’s what you’ve got, but because their treatment approach will be more insightful for your particular situation).

You are not expected to be able to cope with this like some kind of supermum. You don’t have to do this alone. Getting professional support is absolutely going to set you in good stead to see improvements in your daily experience, your resilience, and making sure that a serious mental health issue doesn’t take hold.

Congratulate yourself for reaching out - both here and with your GP. That was a really big and important first step in getting things improving.

 

[littleoc]

I’m so glad you’re here.

I agree with @Sideways that even if you don’t end up diagnosed with anything right now, it would be very helpful to have a therapist.

Hugs for you and C. You are both incredibly strong.

 

[Friday]

I was a hospital-mom for a couple years. It really is a world unto itself / like no other. Adding in things like the first time your kid codes? OMFG. And almost worse, when you’re so used to your kid coding that you’re not even phased anymore. When the only good night’s sleep is to the beeps that tell you, even in the deepest sleep, that everything is okay... when going inpatient again is a relief just FOR those beeps (and having nursing staff to share the responsibility with, knowing you don’t have to wake up every 60 minutes for vitals, even if you still do). And so many other things.

Like @Sideways & your doc have said... PTSD is very much a possibility.

As are many other things.

And the first step for ALL of them is getting some badass support for yourself.

And one of the extra cool things about that? Is that sometimes getting that support now, can mean not having this business go on forever.

Traumatic resilience: avoiding ptsd <<< Check this out! :D

 

[Becca-17]

Thank you for responding.
Yes I definitely feel like I'm still in the thick of it so post traumatic stress seemed a little off the mark. I suffered from anxiety before having C, but somehow seemed to cope better afterwards. No panic attacks/hyperventilation etc, but find myself getting quite irrational at the thought of her needing another admission.

@Friday we are lucky that we have all the machines at home so no needing to stay up all night watching the little tyke breathing ?
She has a ventilator, oxygen, ambu bag, suction, catheters, feed pump, HR & sats monitor etc so we literally have everything we need at home in almost any situation, which helps ALOT & is more than alot are given so we are thankful for that.

I find I swing too & fro quite a bit.
I have an amazing daughter whom I love to bits & has, without a doubt, made my life better, but I hate what she has to go through & feel guilt for not being able to do more.

I think I just need better coping tactics more than anything.

 

[StellaBlue]

Another "hospital mom" here - although after NICU, not critical care - just 10 surgeries from birth to age 2 (I worry about him having PTSD along with me).

I don't know you or your doctor, but I find it a bit irritating that he is slapping a potential label of PTSD on you without recognizing the amount of current stress you are under. How can it be "post traumatic stress" when it's happening right now?!!!

I think it's great you're reaching out and looking for support - I don't know what resources are available in your area - but I'd recommend looking into that (and also keep coming here as well). As someone above posted - while things suck right now, you are in a good position to prevent this from turning into PTSD.

(And - it's good to remember all of this once your daughter becomes a teenager and you want to wring her neck ?)

 

[Lucycat]

Hi and welcome, I've not been through your experience but I do understand a bit as I was a community children's nurse looking after children with life limiting and life threatening conditions. But I could go home at night.

I don't know if you have PTSD, but you are deserving of support and help, both for yourself and for you as a family. It is hard to shout out, but I hope you can find some help. The NHS used to be better than this.