Trauma from baby's surgery and ongoing condition 9months PP

[Sunshines89]

My DD is 9mo, she was born with TOF (tracheoesophageal fistula) so had to have her oesophagus disconnected from her windpipe and reconnected back together within 12 hours of being born.

Weaning has been immensely anxiety-inducing on top of the anxiety I already have from everything since DD was born. We're now waiting to have her oesophagus checked which means her going under general anesthetic and a camera put down her throat, with probably a stretch of her oesophagus being needed to help her swallow properly. Despite her already having been anaesthetised at such a young age, the thought of her going back under is really panicking me.

The point of my post is that I don't think I can cope with the strain of it all. I love her so so much and it kills me every day that this all had to happen to her, the guilt I feel is immeasurable (although there is "nothing I could have done to prevent it"). I am going to hate myself for the rest of my life for not being able to have a fully healthy baby and it's something she/we are going to have to continue to navigate throughout the rest of her life. It will get easier as she gets older and can communicate that she's uncomfortable while eating. But before we get to that point, I feel completely wretched.

Every time she eats something she can't manage and has to vomit it back up I feel completely at fault because I'm the one preparing her food and we have to try different sized lumps etc to see what she can and can't manage. She had been doing amazingly well but her ability seems to be reducing, probably because the scar tissue in her oesophagus is creating a narrowing (which will be resolved with a stretch).

I don't know how to accept that this has happened and that this is going to be our parenting experience. We can't have another baby because we are both so traumatised by DD's birth and terrified of what could happen if we had another baby. I'm so aware that this is my only time to experience this, all the amazing things she does day in day out, and it's all tainted and ruined by the fact I couldn't grow her properly. And every day is centred around her 3 meals - we could have the best day but then a tricky dinner and the day will be ruined.

I've had CBT which was useless for this element. They assessed me as having mild PTSD, below the threshold they will help with. I feel so angry all the time that this had to happen to my girl and that nothing will ever change it. I'm sure in time things will improve but right now it feels all consuming and I can't get past it.

I guess I'm hoping someone out there will be able to relate and give some words of wisdom, or even just some straight talking "get over it". I need to get out of my head but it all comes back no matter what I do to try to distract myself.

The most important aspect of parenting is accepting and loving your child exactly as they are, for who they are! It sounds like your personal feelings of guilt are getting in the way of that, but are actually just a panic response on your part (seeing as you haven't actually done anything whatsoever wrong- it's not your fault at all), to a situation that felt very scary and out of control. Maybe something you've been somehow conditioned to do, blame yourself I mean? Try to be very kind to yourself and allow yourself all the time you need, but try to get to a place of being able to talk to yourself with compassion and kindness- if not for yourself try to do it for your beautiful daughter's sake. It might not feel doable right now but I promise you you will get there. My heart goes out to you- I can't imagine how traumatic it must be to have your newborn have to have surgery.

<wee hug>

You will manage - all of us with babies who Need Extra Things do, in exactly the same way as those of us with babies who Need The Usual Things do.

One of mine was very unwell for 10 years, he's fine now. I had to learn a whole heap of skills that I didn't want to even know about let alone be competent in. It was scary, and too much responsibility, and I was tired and upset and felt like I was the worst mother in the world.

Being sad and overwhelmed and resentful and angry is reasonable - your baby has been handed a really rough deck of cards and that is just unfair.

But, she has you. And you are going to be able to give her just what she needs, I know that because here you are already looking for some support. Lucky baby.

Here's what I wish someone told me:

get a knowledge network - you got a specialist nurse? Is there a charity for your LO's condition? Find someone who "gets" it so you can vent, ask questions and know that if you need to moan you can. Find out about benefits - you might be eligible for carers allowance or baby might get DLA. Find the hospital's family support people and ask for help with filling out the form, don't do it alone, it'll upset and you and there is a formula to the anyway.

get support - get a group of friends who can drop you round a coffee and kindness or sort pets or shopping or pick up the things that you are currently overwhelmed by. Or figure out how to outsource those things - cleaner, a gardener, supermarket deliveries, gym membership, baby swimming, massage, whatever - that's why you need to get the benefits you are eligible for, and spend it on what keeps you sane.

Have a very, very low bar for asking for help for yourself, watch your mental health like a hawk. If you go down, she goes down, and that isn't an option.
Might be worth speaking to your GP now and say what you did in the post - there might be resources or support the practice can offer, some run groups for parents of kids with extra needs, maybe the practice nurse can be a port of call, health visitor might be able to offer something, they will know of the local groups and online groups and what not.

There is a place on MN for "children's health" - even if you don't find someone with the same condition you are managing you might find someone with similar issues, or someone who can direct you to the right place.

get practical - what is the worst scene scenario you have been in, and what would have made it easier? Emergency hospital bag always packed and kept near the door, an extra long phone cable, a spare battery charger thing, a spare pair of reading glasses, a tenner's worth of pound coins, your own pillow, a warm pair of socks, an hour off the ward.

get cover - if you are sick/unable, who can take over? Don't be the only one in her life who knows what her medication regime is, what consistency her food is, how she needs to sit after eating, what her favourite teddy is, what the red flags are. Get a small group of people that you can TRUST. There will be time when you can't do it, so plan for it now.

Don't panic about other babies yet, you'll find your feet with this and life will look very different in six months, and then again in a year and before you know it you are looking at a giant with a beard. Well, my little dramatist is male, so maybe you'll not get the beard. I can send you some. He looks like a haystack. I can't believe my bloody luck.

Oh, and avoid people who want to send you that fucking awful poem about wanting to go on holiday to Italy and landing up in Holland or whatever it is. They can fuck right off.

Hang in there.

Dh was a TOF baby, it’s nothing that you’ve done or caused, it’s a random birth defect with no genetic cause. It’s a midline defect that happens as the fetus folds in on itself in very early pregnancy.

Similar to tongue ties, cleft palette issues etc. It’s a ‘quirk’ which developed three weeks post conception as the neural tube starts to come together.

DH had his issues, had to have surgery when he was a baby and into his teens (this is going back a while). However, he’s a fully grown adult with no major issues bar the occasional need for a glass of water if more stodgy food gets stuck.

Whilst a general anaesthetic isn’t to be sniffed at, your daughter won’t be aware of any of the procedure occurring.

Also, lots of babies vomit, it’s their way of clearing their throat at times. It’s like in newborns, if they eat too much up it comes. I wouldn’t stress too much about the food, give her a variety of textures and take it from there.

Additionally, if she picks up on your stress around mealtimes it can cause issues in the long run. I have a child with ARFID and honestly the one things it’s taught me is not to stress about food. It’s just not worth it, and we’re all a lot more happier as a result.

Also, what is healthy anyway? What is a healthy baby? Is it a baby that breathes and whose heart beats? Just because your baby is ‘healthy’ at birth, doesn’t mean something won’t happen later. Or vice versa, just because they’re poorly at birth doesn’t mean they’re going to be poorly forever. Health isn’t a guarantee for any of us, baby or otherwise. Any number of things can happen that can mean our health is compromised, and a lot of these are well out of our control.

Statistically we’re all at risk of being hit by a bus, sometimes you’re the one that gets hit by said bus. You didn’t do anything wrong, nor did you fail your daughter. Sometimes Mother Nature is just a giant cowbag.

I'm sorry you're struggling so much. I don't yet have children so can only imagine how hard going through all this has been.
I do have some Paediatric Surgery experience though so wanted to make sure you knew about the TOFs Charity (tofs.org.uk/). They are a parent run charity and have so much experience, perhaps talking with other parents who have been through the exact same thing will help?

I'm sorry your daughter was born with TOF, and for the traumatic start you've had to parenthood. I think what you're feeling is absolutely understandable, even if not always rational.

I was born with TOF, which wasn't picked up via ultrasound, so was only diagnosed when I got double pneumonia and was choking on milk. Obviously, it was a huge shock for my parents, and I had to undergo two major surgeries as I re-fistulated at ~6 weeks old.

Hopefully, it will be encouraging for you to hear that, despite the TOF and subsequent surgeries, I haven't had long-term issues. Occasionally, food will feel 'stuck' (usually something like bread), but a drink of water is enough to clear it. And of course I don't blame my parents at all for what happened. I know you know this, but the TOF wasn't your fault.
For what it's worth, my younger siblings were born healthy.

I hope your daughter's eating improves as she grows and that you find things to help you process and heal.

I really feel for you. I vividly remember, 50 years ago, when my little one had to have surgery and people said things like it wasn't that serious, children were dying overseas of starvation or lack of medical care. I'm ashamed to say it meant nothing to me, my baby was all that mattered. One day in hospital he had a blood test, it was difficult and numerous attempts made and he was screaming and I put my head by him and sobbed. It did get better but the second surgery was hard. I look back and it doesn't even seem like it happened to him and that I was in such a state.

I can't guarantee how you will heal, all I can say is as time went by I did get better, he recovered and the surgeries worked perfectly. He has no memory of it and he thinks the description of me being the biggest cry baby on the ward is quite funny.

This isn't your fault, you love her, you care for her, your heart bleeds for her and you can't do anymore. I hope the surgery is successful and you can put this behind you. If it won't offend you I will say a prayer for her tonight.

Thank you everyone for your kind replies. It is really helpful to hear of all your experiences and I'm sorry to those of you who have had to deal with your babies being unwell. I can't help but feel incredibly resentful towards those who get to experience motherhood without having to experience NICU or a children's ward.

It's also great to hear from those of you with direct TOF experience. All I hear is how rare a condition it is and, asides from DD's surgeon, it's been hard to find medical professionals who have experience of it, which has led to a lot of incorrect information being given.

@Threepio I have heard of the TOF website but if I'm honest I find it very upsetting to look at it, I can feel my heart rate pick up when I read the word oesophagus 😅 I'm hoping in time I'll be able to get some comfort and help from the site instead. I've been told there's a TOF Facebook page as well but I'm not on Facebook. There are also a lot of different TOF variants with associated conditions which I'm pleased to say DD doesn't have, but oddly it also makes me panic to think of what else could have happened to her even though it didn't! So at the moment hearing from parents whose kids have other things to deal with alongside TOF adds to my anxiety.

Thank you again for all your comments and for being gentle with me ❤️ I never ever imagined being a mum could feel like this. The love I have for DD is so overwhelming at times, I'm hoping sometime soon I'll be able to just enjoy her and our bond rather than dwelling on all the stuff that has tried to taint it.

Hi,

I just wanted to say I completely understand you feeling this way. Been through similar with my DS. Completely different issues but multiple anaesthetics / ops and the same guilt about how much he has to endure in his little life.
The operations never get easier. It is traumatising & the worry is overwhelming. I understand that.
He's 3 now & it's easier to cope. After his latest op he said he was a bit frightened but he was brave and he knew mummy would be right there waiting for him when he woke up. It was at this point I started to be kind to myself. I'm not in control of his medical needs but he's told me that he can cope because he knows I'm there with him. It's that part of parenting that's important. He knows no matter what he has to face I'll be with him. That's my job.

Please be kind to yourself. You sound like an amazing parent who is going above and beyond for your DD despite a really challenging time.

I know it's so hard but you'll get through this and she's immensely lucky to have such a loving and dedicated parent.

@pottyproblems87 thank you, this actually really helped me and has, for today at least, made me reframe things a bit in my mind. When she has difficulty eating and needs to vomit, I've mastered the art of staying calm and reassuring her but it hurts to see her look at me while going through it - I had been taking her looks as a "why have you done this to me" but actually I think it's a "make it better" look, which is what I can do by patting her back to help it come up and telling her it'll be okay. I'm trying so hard to do everything right but feeling like I'm failing at it, but I guess provided she gets comfort from me then I'm doing something right.

I hope your DS is doing better now. He is lucky to have you and I can imagine just how safe he feels around you based on how reassuring you have been to an internet stranger.

@Sunshines89 - it definitely will be a 'make this better / am I going to be okay look'. It shows she has a secure attachment to you and that she looks to you when she is feeling vulnerable. It's a survival thing. It's meant to provoke a strong emotional feeling in you, even terror, because nature needs you to react and respond to her to ensure her safety. Humans are too clever for our own good and we forget so much of what we go through is primal.
She needs you to survive so she reacts in a way that will ensure you respond to her & meet that need as her brain tells her she's in danger. Neither your nor her brain can rationalise that actually she's not going to die because it's just an instinct.

I'm glad you found some way to reframe things. That's amazing. DS is doing amazing now and I hope we're out of the woods now!

I wrote 'a letter to my baby' every few months. I don't think I'll ever give them to DS but who knows. Anyway, I've used them as a journal to reflect long term. I talk about the happy memories of the past few months, his likes and dislikes, but the hard stuff too. I really found this helps me as it shows me that both our lives are full of joy and even the rough times are full of love.

Oh OP, I’m so sorry for you. I feel and share your pain. I don’t have experience of TOP but, like potty, I have experience of extensive and ongoing health issues with a child (my DD3 in my case, diagnosed with leukaemia at 3) and it’s really hard. As their mum you want nothing more than to be able to take their pain away. I used to have to hold DD down while she screamed ‘make them stop mummy, make it stop’, feeling like the worst mum in the universe even though I knew she and I had no choice. DD has had many operations under GA and it never ever gets easier watching her go under. I often think that it’s a good thing I didn’t have a crystal ball when she was first diagnosed - if I could have seen what I was in for I don’t know how I’d have got through it. As it was I just took it a day at a time when I needed to (which was most of the first few months) and even though I felt helpless and lost and like it was all too much and too fucking unfair, I did the only thing I could, which was keep my shit together every day and love her through everything. She and I did it together and you and your little one will too.
You’ll discover yourself to be stronger than you ever thought you’d be. Is it fair that other people get to enjoy their normal babies and their normal lives while you’re pushed sideways into this other world where you have to know all the ways in which shit can go wrong? No, it’s not fair in the slightest. But you’re in it, and even though it feels like you’re alone in it, I promise you aren’t. There are people along the way who will lift you up and support you and when you feel like you’re at the bottom of your barrel, they’ll be there and somehow help you scrape up that last bit of energy you need to get through another day. And sooner or later it will get easier, and one day it’ll be a long distant memory. You’ll never get over it - trauma like that doesn’t leave you; it fundamentally changes you as a person. But you’ll learn to live alongside it, and even though the life you’ve been given isn’t the one you expected, there are so many beautiful things in this one too. There are always moments of joy and magic. Your baby will be ok and so will you ❤️ you’re a team - your love for her and hers for you will give you the strength you need to carry on even when you feel like you can’t. Lots of love OP xx

I’m so sorry this has happened to you and it must be so stressful!

You need more therapy. Can you get some privately? The CBT available on the NHS isn’t great. With my ptsd I got the impression that because I was still able to function and go to work they said I was fine when i really wasn’t. I convinced myself I was okay because they said so but after a while I realised I wasn’t, and having more therapy privately really helped me and we were able to go on to have another child.

Things will get better. As your child grows and you experience more happy moments with them and more firsts, you will start to get better too.

Nothing you did to cause this
Guilt is one of the stages
gabrielafrancisco.medium.com/8-stages-of-grief-parents-of-children-with-special-abilities-mental-health-face-1057430a17f8
Talk to another thwrapist
Keep writing it down
You will reach acceprance
Your baby right now knows no difference she just needs to feel loved

It’s hard. My first child has autism that I’m almost certain was caused by birth trauma. I mean he may well have been this way anyway, but I’m sure being starved of oxygen probably hasn’t helped. We are lucky he is not more affected than he is. I had quite a lot of anxiety when he was a baby and quite a lot of guilt when he was diagnosed, but now it’s just part of who he is.

It sounds like she’s your first baby which is harder I think. Most babies cough splutter and gag during weaning so not having a frame of reference might be making thing worse.

one of my antenatal friends had a baby with a TOF, I remember fondly her cute little barking cough that she had, and whilst weaning was perhaps a bit more traumatic than for the rest of us she is a brilliant little girl with no significant issues. You will get through this, it will be ok.