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.

Oh bless you OP 💐

I commented on your other thread and I'm really glad you are getting tested privately - more than anything I hope they will be able to rule out MND for you, I kind of understand how terrifying it must be to await those results as my darling sister in law was diagnosed with it a year ago.

I hope I'm the meantime you can take some comfort in the fact that you have a wonderful healthy baby with a loving husband....oh and loads of strangers on here who are all rooting for you x

Hi mama, I had similar concerns with my son when he was 6 months. He doesn't like eye contact still at 4 years old but does not have autism. Happy clever 4 year old.

To note, my PPA & PND drove those thoughts x

Oh sweetheart, please do not give yourself a hard time. Sending you some love xxx

I hope all the replies are helping you feel better. My daughter was born after multiple rounds of IVF. She was born with a (randomly occurring) rare genetic condition that completely changed our lives. I really struggled with the feeling that I had caused it by pursuing the IVF (even though the geneticists told me there was no connection). I also struggled with feelings about how unfair it was that I didn’t get the happy ending after going through so much to have children. It took a while but those feeling subsided. Life is not without its challenges, but I love my daughter beyond measure and we are happy. I wish I had known that in those early years. Stay strong. Whatever happens you’ve got this.

OP sorry things are so hard. Maybe your son will turn out to be on te spectrum, just as likely or more so it's your anxiety deceiving you.

Whatever happens, please don't guilt yourself. You have done nothing wrong, lots of women have healthy babies after Ivf.

You have a lot on your plate. You can't change the past, focus on what you can do now to cope. Fwiw I have a half brother on the spectrum - first sign was refusal to look at people as a baby - and he is now living independently and quite OK.

Hey ! I have been a longtime lurker on mumsnet for years and your post prompted me to finally create account.
I so so appreciate your post even though it seems mean to say becaUse I know you are having an awful time but it is because you're baby sounds exactly like my 6.5 month old to a T and I have been eating myself alive with anxiety about it pretty much since he has been a newborn so you are definetely not alone! I have been in bits with excessive worry about him and autism and have spent an embarassing amount of time on google and mumsnet trying to seek reassurance about his behaviour only to end up being even more worried.

We struggled but were lucky enough to eventually conceive and did not have IVF. However did have progesterone pessaries until 16 weeks and I have also been convincing myself this is the reason for these traits so I think if you are prone to anxiety you will always find a reason to try and blame yourself.

I have found it extremely extremely tough to cope with my son's demeanour pretty much since 3 days old between 18 hour days of wailing crying, hating being held or cuddled, always squirming away, being very agitated with feeds, wriggling his hips, slapping his hand against me, pushing thr bottle in and out his mouth repeatedly, crying being put down, crying being held, crying trying to play, crying at every mum and baby group we try to go to, crying in car seats, prams, pretty much everything other than walking around with him outward facing and showing him different objects. I feel sad when relatives or friends try and interact with him and he gives very little eye contact and shows no interest in people whereas a lot of the babies I see are trying to engage with people and smiling a lot etc. Feel the most pain that he is also like this with me (apparently his whole world from all the books articles etc) but seems to reject all physical contact and affection even since a newborn and dislikes it with a passion and that I struggle to feel a connection because I find I am walking around most of the day knackered from constantly trying to pacify a very unhappy baby.
Sorry to go on and on about my own situation but I have felt so stressed about it and have not had any of the additional stresses you have had with your own health so you are a very strong person and your baby and husband are so lucky to have you in their life.
I know it is hard to think like that when everything feels so negative. I have frequently been told I sound like I have postnatal depression but I often think it is the chicken and egg theory and quite honestly would defy anyone to not feel depressed when they feel like their baby is chronically unhappy and not meeting milestones etc never mind having additional health scares like yours3lf. However I think with all your stresses and worries it can turn into a negative spiral of thinking and can perpetuate further negative thinking until everything becomes confirmation bias and then it's hard to just be and see your baby for a unique little person and not a diagnosis.
Quite often I find that when I try and pull myself out of the negative anxiety spiral that my son seems to in the next few days surprise me and perform a task I convinced myself he wasnt going to do "normally" etc and I dont know if it is genuine coincidence for that I just coulsbt see the wood for the trees prior to that because of my worrying etc

It sounds like you have a lovely supportive husband and I'm sure your baby is amazing and I think sometimes trying to tell yourself it's your baby's little quirks is helpful unless a medical professional advises they have concerns etc.
I also play the song "dont worry be happy" frequently to try and calm me and my son down on very bad days and the simple line "In every life we have some trouble but when you worry, you make it double" helps to ground me again.
And please please dont regret IVF. I think how amazing that you wanted your lovely baby son much you put yourself through all the stress and hurt of that process to get them and just shows they are more loved than anything.

Hi OP, I haven't read the full thread, but have read your comments. I've been in a similar place to you, in several ways. I experienced severe neuro symptoms, something was very wrong and I/we were convinced I had MS/MND or other serious condition. I was tingling and buzzing all over, my arms and fingers were twitching and moving strangely, my legs weren't working properly vision/balance affected, exhausted etc. After nothing showed up in MRIs/CT scans, it turned out I have Functional Neurological Disorder. Has your neurologist considered that for you? It causes very real physical symptoms (like yours) but there is no underlying physical cause that can be seen on a scan. I'm expected to make a full recovery, and am nearly there. It can be triggered by stress/sleep deprivation/illness/injury etc. I just thought I'd mention it just in case it sounds like a possibility. Anxiety and fear run through your posts so clearly. You sound just like me when I have had episodes of health anxiety and depression. I think if you can improve your mental wellbeing you will more hopeful for the future. I have a child with significant SEN, and I can tell you that for me, the worry and fear about the future has always been so much harder and more frightening than the actual reality, which is that we are a happy loving family and my child is perfect just as she is. I hope you feel better soon x
https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/functional-neurological-disorder

Hi

Do contact this organisation https://www.mndassociation.org/

They can talk through about the diagnosis process .

Hopefullt you don’t have MND , but they can still talk to you about the process of diagnosis and getting tests . If it is , there is lots of support they can offer.

Ah OP, my heart goes out to you.
I've been where you are.
I was diagnosed with FND as an above poster linked to. It was very scary at the time, and MRI showed only normal 'age related' changes... menwhile I had several months when I couldn't walk, my speech was slurred.. everything was wrong.
My baby was also 'wrong' he didn't smile, didn't hold up his head..was diagnosed with hypotonia (he was floppY)_ delayed maturation (no smiles) etc etc. I was convinced he was autistic.

As it happens I was right, he IS autistic. But he's also kind, funny, awesome,. He didn't talk til he was 5, walked at 2 ish, went to special school... yet he now has a full time job, he's loved and loving.

I had severe PND with him, but when the fog lifted I had a smiley loving little boy.

Hang in there!

@VivaVivaa my gp mentioned that a referral to rheumatology or neurology is likely. The rest is just my fears at this point based on the number progressive of symptoms, some of dating back to 2021 and never experiencing anything remotely like what I am experiencing now, and the fact that most basic stuff has been ruled out. I think MS is probably not on the table either given clear brain and spine mri.

i know that current wait for neurology is really long (my boy has been referred back in December and we were told that there is about 32 week wait...).

i had really worrying time since November when i had a suspected soft tissue sarcoma and it took three months since I saw the gp to see a consultant and four months till the results of biopsy were done. I am really grateful that it all came back clear but it was agonising going from one test to another when malignancy was suspected and long waits were detrimental to my mental health. Hence it is my initiative to see a private neurologist because I just don’t think I can take any more prolonged waiting.

@Pumpkinspicedmum I can relate so much to what you have been feeling and I can see how hard it is to believe someone when you are not feeling well. I am so happy that you are feeling better now and I found it so interesting. I never thought of the prolonged effect of the stress on the body in that way. I think that is contributing to my symptoms for sure - either in addition to what else is going on or as FND like was suggested too.

i have struggled with mental health after I lost my dad and due to infertility, and just as I was making some recovery, COVID pandemic hit and it honestly knocked me off my feet and my stress levels were really high since then. I was really scared of catching the virus, and then it greatly interferes with the ivf as the lockdown happened just as I was about to go through egg collection procedure and embryo transfer. But then all clinics closed so I had the egg collection procedure but we were not allowed to proceed with the transfer and had to wait till the clinics reopened.

thanks again, it feels really reassuring to know that somebody had been through something similar and felt what I am feeling now.

@MindatWork thank you, there is really so much more psychological pressure isn’t there with ivf?

@Zitouna you literally gave me hope yesterday, and that this could be an alternative explanation. I did wonder about something similar but could not find any accounts of this on mumsnet or from real people. It really is interesting to hear that you felt it was progressive too. I heard also that relaxin can stay in your body whilst you are breastfeeding so I am hoping it could be the culprit in addition to stress, and general fatigue. Time will tell but I feel a bit better knowing that this is an option.

could I ask if you also felt a bit unstable in your joints and almost like your muscles had to work harder to hold yourself up?

on my other thread someone suggested hyper mobility syndrome which I looked into with a lot of interest. I am not sure I have it , or if I do it is mild - once physiotherapist suggested that I had a bit of that going on and whilst I am definitely not double jointed my joints were always slightly more flexible than average.

@MusselTryHarder thank you for your kind words, you have been through so much! How is your son now? I know how scary it is when there has been complication during labour, I am so so sorry that you had to live with that fear and totally get it.

I am also so humbled as I am having a glimpse of what it is like to struggle physically and have to push through everyday tasks. I hope your condition is manageable, and I like the philosophy and the outlook you found.

@MrJollyLivesNextDoor - thank you so much for your support here and in the other thread 💕

@ThreeLocusts , @MummyofTw0 , @gemloving , @WannabeMarieKondo thank you for taking the time to reply, i appreciate every message and very lucky to have so many great people replying

Two IVF babies here. DD1 was a very difficult baby. Barely slept, hated napping, wouldn’t look at anyone else, didn’t crawl and was constantly squirming with annoyance at everything. At one point, between the ages of 12mo and 20mo she would simply scream at the top of her lungs in any kind of social situation, even in a shop.

She’s 4yo, at preschool full time and is a happy, friendly, intelligent and kind. Not a trace of neurodiversity.

I say this with kindness, but please get your own mental health checked out. Infertility and IVF are brutal. There may well be something there with your DS, but equally this could be a situation where you’re spotting all the ‘signs’ due to PNA or similar.

I’ve 2 children diagnosed with autism ,and one other that was missed .
im waiting assessment and my dh definitely is on spectrum but not seeking diagnosis.
we get on just fine
my eldest with autism got A and B grades in his A levels ,maths chemistry physics..other one doing a masters in maths .
they didn’t get their brains from me
it was very difficult when they were small ,I won’t lie ,I nearly cracked up .
but it’s a different ball game now they are adults.
my advice would always be ..
get the EHCP in place before they start school ,it will make all the difference if proper support is in place from year 1.
mine didn’t get EHCP untill year 6 and year 3 ..
too late for both of them by then ….by too late ,I mean they could no longer cope in school ,and I’ve had to home educate for years and years with both of them at different times ..
obviously that’s me stuck at home ,with no career…such is life ..but anyway their lives are good now ,and fulfilled

Have you actually seen your blood test results or has your Dr just told you they are fine? Most drs have very little training in vitamins and minerals despite the affect they have on your body. Many ranges that labs consider normal are really wide and what might be fine for some people is not fine for others.
I was told my ferritin levels (iron storage) were fine for years even though I had terrible fatigue and other symptoms. My level was 21 at one point and even though 30 and below is considered absolute iron deficiency, my Dr said I was fine because their lab say over 18 is ok. Actually many people will need to be over 100 or 150 to feel really well.
This is just an example of one thing but low B12 and vitamin D can also have nasty symptoms. It could be worth getting your blood test results and doing some research based on the results and your symptoms.

@Wobblyheart yes, felt very unstable and like joints wouldn’t hold me. Got to the stage where I was afraid to kneel down to put my son on the playmat, as I felt too unstable and like I might fall over with him. It got progressively worse till about 6 months (around when I stopped breast feeding in the daytime) and then gradually better.

WobblyHeart in the end he was developing normally and we avoided any permanent damage from the birth complications. The worst bit was the insecurity in not knowing, and some doctors then rushing in to diagnose him with motor symptoms of cerebral palsy. In retrospect this was unprofessional and inaccurate, especially if it is true that you can't diagnose a lot of these issues until they're older and have "missed" milestones, as other doctors would tell me. I felt awful that the choices I made during the birth could be the reason for any eventual diagnosis, if there was one to come. That, combined with "false positives" from some doctors, meant that I was a total mess of anxiety that year, and had several mental health breakdowns which I'd never experienced before, and meant that I just couldn't parent for weeks at a time. My anxiety stemmed from guilt over choices I'd made, the insecurity of not living with uncertainty potentially for years while opportunities to support him could be missed if he did have additional needs, and some doctors making (evidently) inaccurate diagnoses. It was a shit place to be, but fortunately, we're all doing ok after the birth, I became better at managing uncertainty, and I changed my outlook on life to try to accept what I can't control, which touches on everything, including my own health. It's flipping hard though, and I got loads of therapy to get here.

The worst thing is the uncertainty, especially when you have your first baby and all of a sudden you are invested in a positive outcome in a way that you have never been before with anything. It becomes life or death. I wish you all the best for the future, and hope that the words from other posters here have helped you feel more at ease with managing whatever comes your way in life xx

I'm not sure if it's the same, but I also had a baby quite late and since the birth, my physical health hasn't been right. I see a rheumatologist this week, but I am in so much pain and it worries me as the pain isn't in my joints.

I have fears like yours, especially as my husband also has a chronic illness and depends on me. I have no idea what they would do without me. But I keep thinking that I gave my daughter life and they would manage, somehow. I also try to put faith in God that everything will be alright in the end, even if I do die or fall very ill. I appreciate not everyone finds comfort in that, but for me it really helps.

@InvisibleMe2 thank you for sharing your story and so sorry that you had to go through so much. I can hear so much strength in your messages and you sound like a wonderful mum. I feel like such a wuss being on the brink because of the possibilities and really grateful that you reached out, I feel so much more hopeful that whatever happens, there is always room for love and that what matters most.

@Vespaa i am so glad that you decided to post and I hope you found replies here as helpful as I did. I also feel better knowing I am not alone in feeling so anxious about my baby’s development. Its still a rather unpleasant place to b me but at least it’s not lonely anymore. I found it very hard when my concerns about the baby were dismissed by people close to me.

our babies indeed share similar traits but my boy doesn’t really cry. And here’s the nugget - I actually worry about it, feels like he is too placid. He grumbles, grunts and whimpers a lot but doesn’t cry when I love the room, doesn’t cry when he is hungry (he will occasionally cry at night when he is hungry and the boob doesn’t materialise quickly). I read that this too can be sign of developmental problems. I can only imagine how mentally tough it is to have a baby who is crying all the time - absolutely mentally exhausting, let alone physically... Hope you have help with him so you can have breaks. But I guess we are wired to worry about these things and i think that whilst it might not be autism at all but there might be a reason why your little one is so unsettled. Could it be silent reflux? Mine has it and I wonder whether feeding issues and being grumpy with it sometimes interferes.... or maybe mine is just a very chilled baby and yours is a loud one?

thank you for all of your other thoughts too. I completely agree, and you just took the words out of my mouth about anxiety and chicken and egg, just 100%!!!!! Whilst I realise that I am very prone to anxiety, there are real things that are hapenning that triggering it. And I find it very upsetting and it makes me feel so absolutely helpless and hopeless when everything that we experience is just being dismissed as an anxiety. I really believe my anxiety would be much reduced if healthcare waiting times were shorter. Poor nhs is under so much strain but those long waiting times cause so much anxiety and upset affecting peoples mental and physical health which undoubtedly results in more gp appointments / needs for mental health support. I found maternity services to be so amazing I wish all other services ran similarly to that. I know it’s unrealistic but so much stress could be avoided if there was better access to gps and quicker diagnostics. Or if private healthcare was more affordable. So I think it would be so much more helpful if together with addressing anxiety a cause of it could also be addressed.

how is your HV? I am very lucky to have a really good one and the team seems to be very good here too. Whilst they could not 100% reassure me, I felt better for taking a step in talking to them. I guess it just about regaining control and feeling like you are trying to get the support he needs. But equally like someone said earlier, all they need is to be fed, kept warm, comfortable and be loved. And I know that if you are worrying about your baby the same way I do, they have abundance of love.

oh yes and I noticed it too about being more relaxed and positive, and the effect on baby’s development. Love your idea of playing uplifting music, this always help l. I guess looking for other strategies how to get yourself out of the spiral might be useful to. I know I will be re-reading messages on this thread again when, undoubtedly, I will have a wobble.

it would be great to stay in touch, I’ll try to see if i can work out how to use private messages. I find baby groups quite tough at the moment and it is nice to talk to someone with similar concerns.

Bless you, that’s a lot emotionally.

firstly congratulations on a beautiful boy, they all develop differently and grow differently. Most kids grow out of little quirks (mine had a few - still has some), makes him wonderful.

please don’t worry about possibly ASD, even if he has, they’re often the most well behaved wonderful kids.

your health, I wish you the very best for a blessed life with you lovely family x