To feel like I regret IVF....

[Wobblyheart]

Hi everyone,

I am posting here for traffic because I am feeling so hopeless and sad. I haven’t got family or close friends near and i would appreciate any words of encouragement.

I am 36 years old and we wanted a baby for a very long time - been married since I was 27 and actively trying since I was 30. It was just not working. I would never ever had a pregnancy, be it chemical or miscarriage. We tried ivf and the two first attempts were unsuccessfull with BFN. The process was so drawn out because of the pandemic and it made things very difficult. I have the most amazing husband in the world and he wanted a baby so much I always felt like I was broken (both our labs were fine but my body just wasn’t getting pregnant). I was so surprised and happy when for the first time in my life I saw double lines after our third ivf attempt. I had a different protocol then with more progesterone.

what followed next was an extremely anxious pregnancy, slight issues with baby’s kidney was found on 20 week scan, then stalled growth, then reduced movements, then dramatic birth where there were some concerns about oxygen but the doctor reassured us they were not concerned after doing checks. Strange things started to happen to my health too but I blamed it all on pregnancy.

my beautiful boy was born, and the moment they put him on me for feeding changed my world forever. It was the most magical and happy day of my life. First couple weeks were a bliss. After that postnatal anxiety took hold and my physical health deteriorated considerably in the next following months.

fastforward to now, I have serious concerns about my baby’s development. He was late to hold his head - only started doing it around 4-5 months, and now at 6 months his social skills seem to deteriorate. He gives very limited eye contact, turns away from me and other people, does not always respond with a smile, it’s hard to get his attention. He seems to get frustrated with everything very easily. Terrible sleeper, does not get upset if I leave him and walk out from the room. Makes lots of sounds / screams bu not at me but just sort of in his own world. Constantly needs to move, slaps and flaps his hands, feet, squeezes and scratches everything all the time, even when feeding. I read similar posts on here and was disheartened how many times children with these traits went on to be diagnosed with ASD.

meanwhile, I am currently awaiting testing for a potential MND/ neurological disease and really worry that our life can change very dramatically. My husband does not deserve it. My heart is breaking for my son, I am worried about a difficult and terminal illness. And my mind can’t stop but race and think .... did we do a right thing doing ivf. Did we go against the nature and I was never meant to have a child? Did I bring more suffering to this world? My beautiful boy is just so innocent and he is the most bonny baby, and I feel like I might have potentially ruined his and my husbands lives.

i know nothing has been confirmed yet but I am on the verge and really struggling, both physically and mentally.

if anyone has been through something similar, I would appreciate if they reached out. Any positive stories would be very welcomed so I can retain at least some hope and not just sink deeper into the dark abyss.

Thanks for your reply.
I know it doesnt ease any of your worries about your own health or your sons but I think it does help to know you are not alone. I have felt so helpless and exasperated and like I just want to run away and then look at my gorgeous boy and feel so guilty for it ever even crossing my mind and knowing deep down he needs me but i think I just hate feeling so powerless and the feeling of having to surrender to time essentially and to see if it was all in my head or if any of the concerns materialise.

I totally agree about the impact healthcare is having on this and it is so so frustrating. I really feel for the poor staff and actually work for NHS myself so totally understand the pressures they are under but it always feels like you are aware of their pressures and constantly feeling like a time waster even when there is legitimate concerns because they are so overworked and I feel doctors etc are desperate to get you out the door and almost try and pacify you rather than diagnose or advise. This could just be my experience though. And I dont think it is because they dont want to help but because they just dont have the time or resources to help effectively due to funding. I have read about your health scares and the lengthy waits and really really feel for you. It must be agonising worrying about both yourself and your son and being pulled in all different directions. Healthcare system is an absolute shambles! And hearing about delayed and missed diagnosis certainly doesnt ease any anxious thoughts. I think the easier access to the internet and all the wealth of information on it while you are waiting for anything is also detrimental. Its obviously great and allows us to reach out like this but I've found so much conflicting advice (even evidence based studies etc) that would be impossible to follow every piece of information and then becomes overwhelming and again a vicious anxious cycle and because of the struggle to access a gp or health professional that is able to give a thorough assessment and the time to give tailored advice and reassurance you are kind of left to mull over everything and try to draw your own conclusions to things. Obviously having anxiety can lead to catastrophising things and sometimes the concerns might be disproportionate to the reality but equally I feel that when a health professional or individual is aware you are affected by anxiety it almost gives a green light to dismiss any concerns you have and put it down to anxiety because it's easier than exploring further.
Sorry if any of this just fuels your anxiety further because I'm basically just ranting rather than offering solutions ! I wish I had them and like you say the advice from other posters is invaluable

Sorry you felt dismissed by those close to you. I also have experience of this. I have a really supportive sister and brother but my mum can be very dismissive and condescending and it is horrible and always leads me to such defensive interactions which helps nobody. I can interpret a lot of discussions with people as almost a bit smug and desperate to tell you how they are superior in some way shape or form for not worrying about things they have no shared experience of. Maybe again that is the postnatal depression talking but it doesnt feel like it.

So glad your health visitor is a good support to you. I think if you have a good one it is worth its weight in gold. Your husband sounds lovely aswell. Definetely take all the support you can get. It is much needed with everything you have going on. I like what you say about babies being loved, fed and warm. It makes you feel you are at least doing everything you can for them and if in the worst case scenario our concerns are proved to be right at least it is good to know it wouldnt change the way we do anything just now and there is nothing more at this point we can do apart from try and enjoy them and not worry about anything unproven. I suppose in the worst case scenario if babies did have autism it is not the catastrophe it becomes in your own head. I like to remind myself of how desperate I was for a baby when we struggled to conceive and that if someone gave me the option of no baby or how things are just now I would always pick the latter. Like you said before about the long waits I think the unknown and waiting is actually scarier than the thing itself. It's like when one of my relatives had a terminal illness I spent more time worrying and stressing about them passing away when they were here and when they actually passed away it wasnt as stressful as the fear of it if that makes sense. I dont know how to put that across without sounding like I wasnt arsed about my much loved relatives passing lol. I just mean sometimes the fear of something is worse than the thing itself as a lot of previous posters have vouched for.
Yes funny enough I was told my son has silent reflux. However, changes to feeding, medication, holding him upright for 30minutes after feeds and everything else has not really improved anything. Also cut dairy and soy out my diet as previous threads suggested to try and rule out cmpa but this did not resolve anything either. Which makes me think maybe the health visitor I have is right when she says "babies cry" but I still feel my poor babys crying is an abnormal amount particularly for a baby of 6 months and looking around at the behaviour of other babies mines seems vastly different. From my observations it looks as though most babies cry for an easy to suss reason and then stop when that is achieved. However my baby just seems to cry whinge and fuss incessantly and it appears for no reason (or one that I cannot suss out) after trying everything on the list. It is so upsetting when I imagined nurturing and reading and feeding, playing and cuddling my baby but he seems to hate all of these things. I did also think like you maybe perhaps the reflux has caused the slow development because he hated tummy time etc and maybe it is just going go take more time and maybe socialising is not on the top agenda when thry are sore from reflux pain. So glad your baby doesnt cry a lot but totally understand your worries about him not and being in his own little world. It's just anything outside the normal bracket seems stressful. Maybe his own little world is better and he cant be bothered with the norm !
I know the advice is always suggested to get out and I know and totally understand how hard it must be. I used to get so frustrated when it was suggested to me and I thought how can I get out with a screaming child and felt much safer in my own little place but honestly every time I muster up the strength to I ALWAYS feel so much better. Again, I know I dont have the health issues that you do and only you know how feasible that is but it can really make such a massive difference even when it doesnt seem like it.
I still think how can this be worth the effort that it takes between expressing breast milk on time, getting my boy fed, keeping upright for 30 mins, ensuring th4 screaming when getting changed, moved, put in the pram getting down the several flights of stairs with the pram to realise an hour has passed and he will be due fed in another hour but it honestly does always make me feel a million times better and that there is life beyond your worries.

Both my DD's were as you describe, one has autism, one does not (she possibly has mild adhd, the kind that makes you very active and productive rather than a disability, she's an officer in the military) i suspect genetics as their dad is the same and all 3 are very very clever (I am not)

@Wobblyheart

My autistic dd cried a lot, every time I left the room, fed pretty much hourly for months and refused to go in the buggy. Placid is definitely not how I would describe her, she was diagnosed at 2 years

@Zitouna ah, I hope it’s what’s hapenning to me too. I have also just moved into formula feeding during the day but it hasn’t been long yet and it’s about 70-80% formula during the day, 100% breast during the night (but he eats a lot at night! We have 3-4 feeds) so maybe too early to start feeling better.

could I also ask if you felt anything similar - like either a bit weak / slightly discoordinated / like movements are a bit odd in your hands at all? Sorry to bombard you with questions, I could not find anyone at all who would report something similar. Thank you x

@Wobblyheart yes, after my wrists, my fingers started feeling weak too. That was the last thing and I was really upset, felt like I was in some kind of doomed decline - but it was only for a short time and started to get better at that point. No tremors but a sort of weakness and some pain when moving my fingers

Hi @Heydiddlelidl , thank you so much for your reply. A lot of what you described sound soooo soooo familiar so I am really hoping it might be FND, I have only briefly heard about it but did not realise that it could cause to feel the very real symptoms as you describe. I have it all, the buzzing, the twitching, the odd movements / slight discoordination. Plus weakness and fatigue (but who knows that might be something else), I lost nearly 20kilos after pregnancy getting me to be just under healthy bmi. I think I am 18 at the moment. Thank you for giving me a glimpse of hope that there might be other explanations rather than MND and that there is a place for love and happiness in life with a child with addittional needs.

Wow, @StillMedusa I would not believe that FND could cause all that, so thank you for posting, having two people experience that sounds like it could be a very plausible explanation of my symptoms. I will report back in a few weeks after i have seen a neurologist but thanks again for coming in here as it will give me much needed hope to carry on in the meantime. Your son sound so very sweet and so loved.

I experienced a very similar situation OP, breast cancer scare after the birth of my second child, took 4 very stressful months of testing to get the all clear and I spent the entire time in a state of high anxiety imagining the worst. My stress headaches and chest pain eventually subsided but the health anxiety was always there under the surface and eventually resurfaced on holiday several months later. It started out with RSI type symptoms in both hands, extended up my arms and progressed to severe eye pain where I could not open my eyes, painful zapping in my hands and numbness in my legs that never went, just moved around. I had a grandmother with MND and was terrified it was that or MS based on a throw away comment by a physiotherapist. Several tests, a trip to the ER and an amazing older GP and I was diagnosed with health anxiety. Effectively I had PTSD from the earlier trauma of having to exist so long in a state of panic between tests.

I could not believe these symptoms were anxiety induced, which added to the worry. I was also always worried about the health of my children. I would be heartened that your tests have come back negative to date. I’m not saying your symptoms are caused by anxiety, but they absolutely could be.

I believe my body caused such unusual symptoms as a way of making me stop and pay attention that I still hadn't dealt with the earlier cancer scare and needed help.

Regardless of what is going on, I would highly recommend looking into counselling and do anything you can do to get support. Take care and be kind to yourself xx

@Heydiddlelidl can I ask how long did you experience the symptoms for and if they all started together or crept up gradually? Thank you

Morning OP

Babies who have had a difficult birth often benefit from cranial osteopathy I believe. You might want to have a look into it.

@ExhaustedMuch congratulations on your little one. I am so sorry to hear that you are in so much pain, where is it? Have you had your appointment with the doctor yet? I hope that whatever it is it could be easily managed or cured. It is so difficult isn’t it, looking after a baby through physical discomfort? And all the worry about the future...

@Zitouna thank you, my fingers were also last to be affected. I don’t really have pain other than in my pelvic joints but definitely everything feels very weak. Like muscles are weak I suppose but also have rather tight thigh muscles and just feeling oddly discoordinated I guess when walking. Worried also that my grip is slightly affected , and it also feels like I swing my arms more than needed. Sigh. Just feeling low today, sorry I keep going on about it.

I have pains in what I think is my bones (not the joint part), pretty much all over except my ribs. Sometimes it is stabbing, sometimes aching. The tops of my feet can get really painful, and my fingers in between my joints. Also sometimes the muscles on the sides of my feet. I am also exhausted all the time. I keep dropping things, too. And my muscles and tendons keep getting damaged, though the GP reckons that is just motherhood and picking up a baby.

My appointment with the rheumatologist is this week, but I have been worried as I have had repeated infections this year. So, so many. I know it is kind of normal for this year, but I have had way more than anyone else I know. I am seeing an immunologist, too, but there is a three month wait for that.

I can't tell you if your child has ASD. He may be a late developer, he may be a poor sleeper. Nobody can tell or diagnose from a MN post.

As the parent of a child with ASD, I will say this. There risk factors for autism are hugely varied and complex. Nobody has pinned down definitively exactly why it happens. I fell pregnant naturally on the first attempt and had a normal pregnancy but I still had a kid with autism despite there being no obvious genetic link on either side of the family - it happens. If your child turns out to have autism it will NOT be because you 'went against nature' and brought a child into the world via IVF.

You have been through a lot and you are understandably anxious and possibly depressed. You need support and to get help for the distress you are feeling. Be gentle on yourself. Sending hugs

Did we go against the nature and I was never meant to have a child?

There is no 'meant', OP! We go against nature ALL the time. If we didn't then there'd be far fewer babies and mothers alive frankly. Anyone who needs a c-section goes against nature, because in nature they simply wouldn't survive. Anyone who requires a ventouse or forceps is going against nature, in nature again, the birth would stall and both mother and baby wouldn't survive. Anyone who uses contraception is going against nature. Anyone who takes paracetamol is going against nature. Anyone who uses formula is going against nature, because in nature only some mammals produce adequate milk and only their babies would have a chance of survival.

Science is a wonderful thing and there's no 'meant to' or 'not meant to'. And if there were? Clearly you were meant to become a parent because you are one and IVF worked! So clearly if someone believes in destiny, your destiny was to be here now with your lovely son.

I went against nature and was never meant to bring a living baby home because my body couldn't make enough milk to sustain him, and I'm so glad we did go against nature. Nature is cruel and brutal.

My heart goes out to you, OP. Although your potential diagnosis sounds serious, and well worth the worry - your post shows to me anxiety that is uncontrolled. Your baby is 6months old - this is far too young to be connecting ASD with his behaviour. All babies/toddlers/children show behaviour that could be checked on an ASD test - it’s the frequency, effect on quality of life, social abilities and so on that will give an ASD diagnoses. Again, your baby is 6months old - try to push these thoughts out of your head, until baby is 18mo+. Lots of your questions are things you will never know, such as if you went against nature etc. I can understand your link in thinking here - but you cannot allow yourself to dwell on this, as you simply will never know. It is my opinion that things don’t work like that - my own beliefs in pre-mortal life, heaven etc. tell me that this cannot be true. Please look into help for anxiety for a toolbox of things to do when your mind is spiralling. Post Natal Depression doesn’t always come straight away, it can be delayed and come in many forms, so maybe look into this as well. Most of all, i’m sorry that you are going through this. Mental anguish is so draining, I can completely validate your feelings on how this worry is all consuming!

It is very unlikely that your baby has ASD - they tend to be very contented babies and it doesn't sound like your little one is. All the best xx

I've had the symptoms for around 2 years, they started gradually but within about 2 weeks got much, much worse and spread all over. One day I looked up and couldn't see properly, then it went, then I started to notice my arm was tingling at night, then my foot felt weird, then it was both arms, then both legs, vision started to get really bad with "visual snow" and getting vertigo, then one night I woke up feeling like my arm was bring electrified, I had my first disassociative "seizure" episode, struggled to speak, legs weren't working properly, arms felt like they werent part of me, 111 sent an ambulance as they thought I was having a stroke. It was truly terrifying, we were sure something was terribly wrong. Unfortunately one of the problems with FND is that the fear/stress of the symptoms seeming very serious can really trigger and aggravate the condition. I have never been so scared, but I am much better now, and I probably would have recovered much quicker of I hadn't had other difficult/stressful things to cope with, and severe sleep deprivation due to those. Try to look after yourself and be kind to yourself OP.

I agree with all of that.

Your baby sounds quite normal and your own medical investigations may show you are fine. Please try not to worry in advance of the results.

Things will almost certainly get better over the next few months. Bless you.

@Kolakalia thank you, this is such a beautiful perspective 💕 i haven’t thought about it like that and you are right. And your little one is so lucky to have such a wonderful mother.

so bummer of a day. I am having widespread twitching now, feels one losing fine motor skills in my left hand, found out that my grandfather probably passed away from a non-diagnosed MND like illness and on top of it my poor baby’s good kindey started being slightly dialated. He had severe congenital hydronephrosis but only affecting one kidney but now the other one is looking slightly bigger than normal.

every ounce of hope and resilience has been squeezed out from me. I am having really dark thoughts. How can it be that you are most worried about dying and yet feel like you can’t carry on with life anymore?

@Wobblyheart oh love I know how you feel, I really do. I have had several really serious health scares where I was confronted with the terrifying thought of not being around for my family in the future, my child has major health problems and has had several lifesaving emergency surgeries involving serious risk, my DH has kidney disease. I know what its like to feel the way you do. To get worrying symptoms and being consumed by the fear of impending bad news. Now I am not a doctor, and of course no one here can give you medical advice, but I can tell you that at least some of this is anxiety and depression talking. You have had a really, really awful, difficult time for lots of reasons, and you are to some degree catastrophising and spiralling, which is a natural response in difficult times. I'm saying this with kindness because I do it myself. Just try to remember that you have had lots of tests, and as yet they haven't found anything wrong that points to a serious diagnosis. However, the symptoms you describe can be caused by numerous less serious conditions and are certainly made worse by anxiety. I know you are scared for your precious baby, but try not to jump ahead, try and wait and see with a little hope. I think you really do need to speak to your GP about how you are feeling, and try and get some support to help with all this and the impact it is having on you. I have had my struggles and have had several rounds of counselling over the years, as well as choosing to take medication at one very dark period of my life. Please tell someone how you are struggling and seek help, it can get better. I have learnt from long hard experience that the most frightening, worse case scenario is usually the least likely one. Try and take things one day at a time and be very kind to yourself xx

my world is shattered. The neurologist confirmed that I have muscle wasting. He is leaning towards muscle atrophies but MND cant be excluded. I don’t want to believe it.

On a bright side, my DS has been more smiley and sociable but still not sitting. I hope he doesn’t have whatever I have.