post traumatic stress in parents

I'm curious if anyone else has been through a similar experience - Daniel was suddenly diagnosed with a critical heart condition at 11 weeks (I just thought he was skinny and refluxy), and had urgent surgery.   Now whenever I have to take him to Starship for followup I get really tearful just as I come off the motorway and see it in front of me, stressed that they'll find something else. That I understand - it's logical Starship will have bad associations (good thing I no longer work there!). Over Christmas it got much worse, with me reliving the echo/being told he needed surgery/thinking worst case scenarios (him dying) many times a day and would get really upset. This lasted for about a week. The staff on the ward told me I would probably crash at Christmas, and I did. Didn't help it was also the anniversary of Mum's death. But I digress.

Any one been through anything similar?

Hey there

As you know my eldest went thru the same surgery only she was older. At the time I was super mum organising stuff and doing everything to get to england to have the surgery. I did it without my hubby as he had to stay back in the middle east with my son. It didn't bother me during the time (probably kiwikid taking me out to dinner and lots of wine to distract me) I just went into auto pilot.

6 months later was when I started thinking about all the possibilities of what could have happened. I got angry and teary. (still a little teary now reading your post as it does bring it back) It was about that time that my son also had a heart murmor discovered which turned out innocent but still not fair. 1 in 600 kids so why mine? It does get better. Slowly your mind will start to revolve around normal tasks like childcare and food etc and not just medical issues.   Are you on any cdh forums etc. I used to use one based in the uk (heartline) and seeing other people with older kids who have been there done that and live great normal lives really helped me. However everytime I go to the doctors (5 years since surgery) I still cringe with the blood pressure cuff and seem to analyze every number. Same with a stethascope (sp?) incase they find anything else.

I also want to know what caused it. Random pickings frustrate me. I have a theory that it was because my husband was on a drug for bad skin. 3 kids in one family is not right (my youngest also has an innocent heart murmor) Not sure if there is any factual bases in it but it gives me a strange sense of comfort to know that something caused it. IYKWIM some sort of answer and a bit of control over it.

Hope my random thoughts help you a little thru this. Maybe you are thinking similar thoughts and can relate maybe not.   Now I have to worry about my 12 year old texting boys and wanting to go to parties etc. I have already used her heart condition to my advantage and scared her beyond reasoning that cigarettes, alcohol and drugs can't even be an option for her due to her heart. lol. I am sure she will catch on at my melodramatics and realise that I overdid it a bit but there has to be some benefits of going thru this even if it is to tell a few white lies to keep her on the straight and narrow. Or give her an out when the whole peer pressure kicks in.

Boy where did all that come from. Hopefully it gives you a little chuckle. Take care.

ETA I have never been back to the hospital since it is in another country so can only imagine the impact that would have. I did break down watching peter pan though a few years back as it reminded me. Her surgery was at Great Ormond st in London and that hospital was set up by/ or a big benefactor of the author of peter pan as they benefit from all sales etc of the story. Not the same but if a fairy tale can set me off I can only imagine going back to the hospital.

Edited by kiwi2

Thanks girls - geez our July bunch have been thru a lot (you're an honorary July mum, kiwi2). It's good to know you were obsessive about BP and stethoscopes. Kye, IKWYM about the blood tests - I was there for most, but on the last day, they had to take it from a vein - it took 30 minutes and all 4 limbs. I decided I couldn't stay, and am so glad I didn't. As it was, I could hear him from outside the ward - I sat there rocking myself trying not to cry . I did really appreciate that at Starship, they always talked with you about whether you wanted to stay, and I was never made to feel guilty - in fact, I was always given the message that it was OK for me to not be there, that the nurse would look after him, then I could come and comfort him afterward.

Kiwi2, I feel guilty - that's not the right word - but I guess I feel like a fraud if I'm on those sites - what Daniel has is so minor to most other heart conditions, and it's (hopefully) all resolved. But maybe I should go take a look.

Hey there

I bought my own blood pressure cuff for her and tested her twice a day and even when she got worked up over a toy etc. Talk about paranoid. lol.

I also felt a little guilty because Georgias was fixable and not as severe as others. One of the other mothers who came and met me in london who had a really severe child said to me that its all relative and is happening to you so don't compare.

In London they weren't so PC and just told me to leave. Quite glad that they did as I didn't have to worry about the feeling bad thing.   The nurses were great and even told me to go out and get something to eat when things went a bit hairy with her blood pressure. I naively went out and ate and drank plenty of wine and when I came back all was good. Now I look back and think what a bad mother but at the time my mind was sort of in denial that it wasn't so bad.   In hindsight and if the other kids go down this route I would never leave. Sometimes a bit of knowledge can be more stressful.

You guys are doing great. Kids are so stressful. I was just in the ER with my son due to severe dehydration from a tummy bug. Never ends.

Hi guys,
I'm so glad I found this post, as I've gone through something similar. Jake was diagnosed with a major heart defect at 3.5 weeks, and at 6 weeks had open heart surgery. I too have it all come flooding back when we have to go back for a check up. We had to take him back for a brain scan too (I let them use him in a study, to help other heart bubs in the future) and I had to leave the room while the put the NG tube in as he was so upset, I almost lost it in the corridor.

I cried everytime I saw the heart baby billboards while driving to work last year. And when I read the heart children newsletters.

Now I'm really having anxiety attacks about it - as I'm pregnant and we have a 5% chance of it happening again with this baby (instead of the 1% chance everyone has). Scares the h#ll out of me, as it was so traumatic I don't think I could go through it all again. Seriously. And I also feel bad that I feel this way when his problem was "fixable" and not on-going --- but like the others have said, it was still the worst thing I'd experienced in my life, so I have to try and not compare to others in hospital.

I also still feel bad that my reaction to my "imperfect" baby and all the stress it caused me could have in some way impaired our initial bonding, and like I'm a bad mum for worrying about how I was feeling when my baby was so sick.

Anyway - just a bit of a ramble ... but no, you are definitely not alone.

I have a paediatric cardiology scan at starship in a few weeks to check this bubs heart ..... that will bring it all back I'm sure .... wish me luck .....

Kiwi2 - I would be a sceptic too! The figure I got when Jake was in hospital (1.5 years ago, and still being quoted on the heart children literature) are that 1 in 100 bubs in NZ are born with a heart defect (12 a week) so I would have through a murmer was more common than 1 in 600? And you have a 5% chance if there is a genetic link. But you seem to have been really unlucky!! Hopefully the other two are innocent murmers.

The heart scan is on friday .... everything looked OK at my normal 20wk scan the other day ... so fingers crossed!!!

My GP (who is my LMC) referred me to ak hosp for it as I'm now "high risk" after Jakes heart defect.

Jake had a large VSD, faulty tricupid valve and a couple of other minor problems (small hole and enlarged heart on one side).

I feel a little better knowing that the 20wk scan didn't show any major issues, but they can't check for holes or check the valves .... they just look at the chambers, major arteries/veins and that its beating.

With Jake I wasn't too worried that they'd find any problems (a little nervous but excited too), this time I've been terrified of the scans!!

Thanks kiwi2. I'll let you guys know tomorrow how it goes.
Its funny - I got all the stories from people who knew someone with a hole in their heart who was fine too!! I think people think they're helping. But its really not helpful when you're going through it all, especially considering the range of severity of holes etc.

Hi - the heart scan went really well, no problems ... I'm soooo happy! Feel like I can finally relax and enjoy being pregnant now!!!

Yay! Glad it all went well