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.

Have any of your concerns actually been backed up by a medical professional?

It sounds like you could have PPD fuelled by health anxiety relating to the infertility.

So many of the things you describe sound complete normal for a 6 month old baby.

I couldn’t read and run OP. it’s as if you’re taking about my son. He seemed to have all the same traits as yours at that age. BUT! My son is a happy and healthy 10 year old- although he does have something called verbal dyspraxia- the same as Chris Kamara. It has not stopped him from leading a normal life- he’s got a great group of friends, is part of lots of sports club and is happy and healthy. Good luck op. Even if your child does get a diagnosis you’re not going to love them any less x

OP is clear and says that she is awaiting test for a possible diagnosis, and if it MND then that has the potential to dramatically change their lives.

OP you have so much on your plate, its no wonder your head is spinning with what ifs - i think this is almost normal - you have such a young baby and all the demands that brings to be dealing with this when you should be able to relax and enjoy these months - i'm hoping you get the tests done as soon as you can and that might help you be clear on what to do next and what is needed

My 6 month old is just like this OP. He's just distracted by the world around him and gets tired quickly as he's so young still. Did you do NCT or have a mum network?

I can only share some limited experience OP, but the constant moving, squeezing and scratching is quite normal. My baby is 10 months old and up until she was about 8 months my torso looked like I lived with angry cats. She would squeeze me with her little nails every night as I fed her to sleep. Thankfully she's outgrown it now.

Well yeah because MND is terminal. But many neurological diseases are not.

From the tenor of OP’s posts I would think post natal anxiety more likely. But she does have neurological disease they will adapt and cope.

Please go and get your vitamin levels checked - particularly vit d , b12 and folate.

They can cause anxiety - and are depleted in pregnancy.

From what you described, it sounds like your son is within the range of normal baby development to me. If you're very concerned then speak to your health visitor, hopefully they can put your mind at ease

thank you so much everyone for the support, I appreciate each and every message and got properly teary reading them. And his many wise words said, I definitely feel much better about the development of my little one. I suppose I have been just spiralling. With my health issues, my brain was just jumping to the worst case scenario - of being paralysed / dying and leaving my husband with a SN child. He is the best dad and will always love him and will cope no matter what but I just hope for a brighter future for us all.

I think many of you are right and I recognise that part of how I am feeling is the PND however I do have support with it, anti anxiety medication and counselling but my physical health just scares me to a point it’s difficult to cope.

i had a tumour found in November last year and thought the way I was feeling was because I had cancer. Now biopsy returned and based on that and imaging the surgeon is confident it is a benign tumour so that rules out my other symptoms. I am working with a gp to get to the bottom of it. I started feeling that my arm were moving oddly towards the end of the pregnancy (august last year) and I was out of breath. Thought it was just one of those pregnancy things. After birth I recovered from most post birth things but started feeling worse and worse with every week. My coordination seemed to worsen, I lost some of the dexterity in my hands, feel a bit wobbly in my pelvis and knees - it sort of hard to stand and hold myself up. I am profoundly exhausted and breathless, my whole body and every part of it feels like lead, but the balance and movement sensations are just off. My bloods for vitamins, thyroid and muscle damage are all clear. My spine mri from 2021 was clear, my brain mri from last week was clear. My abdominal ultrasound clear... every test comes back as clear yet I never felt like this ever in my life. And I know it’s not anxiety because I had bad anxiety episodes before but it never left me struggling to walk or stand. I am still waiting for some autoimmune stuff to come back but losing hope. I am seeing a neurologist privately in a few weeks because I just can’t go on with waiting and worrying. I really hope that it is something that could be managed but sometimes we just know that something is wrong in our bodies. I feel something is extremely wrong but god knows I hope I am wrong.

I would speak to your doctor about your mental health.

I do understand your post.

I had 4 miscarriages, lost both my fallopian tubes in my 20’s and had to have ivf 3 times for my ds, had a complicated pregnancy, then a complicated birth. Nothing ever went straight forward.

Ds was born healthy, but he was diagnosed with autism when he was 3, he’s 9 now, he also has learning disabilities and adhd. Goes to specialist school.

Life is not what I expected to tell you the truth and I have thought more than once maybe it was gods way of telling me I wasn’t supposed to have children.

I wouldn’t be without my ds though, no matter how hard life is.

Why is it, every time someone posts with worries about autism, people trip over themselves to say it’s totally average and totally normal?

OP, I’m sorry you’ve had such a shit time, and I can really understand why you now feel you didn’t sign up for any of this. I won’t reassure you about autistic traits either. Maybe your son is, maybe your son isn’t. It’s really too early to tell.

What I will say is talk to professionals if you’re worried in the future. Be open to the possibility of autism (I would say that to literally any parent) because there is nothing worse for a child than a parent in denial.

But he’s only six months old. Hard as it is, try to enjoy him as he is because they grow and change so fast.

@Jellycats4life thank you for your kind message. And you are right, things are really tough right now. I did reach out to our health visitors today actually and it was helpful. They ran a quick assessment on the phone and some things are not quite where they are expecting them to be but it could just be that he is developing in his own time. They will follow up with us in a month’s time to see how we will be getting on.

@danni0509 I am so so so sorry to hear how hard your path to motherhood has been and can relate to so much of what you said, especially about not having a straightforward pregnancy and birth. I have never had a miscarriage and could only imagine how awful it must have been. But going through that four times is just soul crushing. I feel for you and so sorry about your sons diagnosis. As it wasn’t cruel enough to endure what you already have. So effing unfair.

thank you for speaking honestly about your experience.... when i had my concerns about my DS very early on as he was not holding his head at all, my husband was always positive and i could not understand how he wasn’t scared of possibilities. He shared with me that he would never stop loving his son no matter what and will deal with whatever is needed to be dealt with. That life is not always happy. Moreover, we all guaranteed some degree of challenges and losses and it’s just part of life. And even if things become
difficult, there could still be place for happiness.

i also know exactly what you mean by wondering whether we were meant to be mothers. But today, thanks to so many replies on this thread (and especially @SkaterBrained , @InvisibleMe2 , @2bazookas , @LittleLegsKeepGoing , @Wherewithout , @MindatWork) I can see that ivf was just our path, and we would have walked it anyway. And that many babies are born with various problems to healthy parents naturally. So Ivf is not the blame and being in that moment, trying for a baby and wanting to have a baby for so long I would always have made the same decision. Because we don’t know in advance what we don’t know.

sorry for the rant, i am an emotional mess today but feeling stronger for all the support here.

Just wanted to say as well that i found replies here - and I appreciate everyone who reassured me -far more helpful than the counselling I have been having. I found the range of perspectives very helpful, and I am open to all of them. Be it whether my baby having any problems or not, I will love him as fiercely as I can. Both my partner and I are also the only siblings in our families to have a child - so my boy is the first and only grandchild to our parents, (which always added so much pressure!)

@Sugargliderwombat i do - we had a really lovely NCT group but I stopped going to meet ups as I just find it very difficult not to compare. I am feeling guilty that I haven’t been exposing him to more social interactions but with my health currently I find it super hard to get out, even a 40 minute walk with a pram exhausts me to a quite a state.

@Worldgonecrazy thanj you for the suggestion, it’s a really good one. I am not sure I am clicking with my current counsellor so it might be worth exploring other avenues if I am not making progress

Who mentioned MND? In my experience, suspicion of such a devastating disease warrants pretty much direct admission into the nearest neurological centre for a full work up. Not being left to pursue a private diagnosis weeks down the line. Did a medical professional directly tell you they think you might have MND?

@wobblyheart I have a family member with MS and I became convinced I had it after intense episodes of numbness and tingling in my left leg. I also developed eyelid twitching, intense nerve sensations in my face and, loss of grip in my hand, muscle twitches, a burning and itching sensation inside the body and dizziness - all MS symptoms. Some episodes were so bad we had to call an ambulance. I subsequently had a brain and spine MRI at the request of my GP and both came back completey clear. My neurologist chatted to me for a long time about how I 100% did not have MS and yet my health anxiety was so bad at this point that even that was not enough to convince me. I eventually got so bad I had a breakdown. After investigations, I was told that after living in a constant state of severe anxiety, I had developed a hyper sensitive nervous system, caused by raised cortisol levels from prolonged stress. Its a completely benign condition that often resolves itself when anxiety is under control. I have been on anti anxiety medication for a while now and am addressing my issues and lo and behold, my symptoms are subsiding. It terrifies me the amount of damage I was inflicting on myself. Please don't stress - with all clear tests, it does sound like you could be in a similar position to me and I would like to assure you that you will feel better. Who knows what the future holds for any of us, and I know first hand how awful health anxiety is, but all we really have is now. Feel free to PM me if you need a chat - I know how scary it can all be and also know how our bodies can play cruel tricks on us when stressed. Sending lots of love and best wishes to you xx

@undergroundstation i am so so sorry to hear about your personal experience with MND. I never really knew about this disease until I started wondering what’s causing my symptoms. Any terminal illness is just so horrendously hard. I really appreciate you reaching out and if I can be any help or be a stranger to talk to on the other side of the phone whenever, please let me know .

I’m so glad you’ve found the support here useful @Wobblyheart - it can feel very lonely after ivf as you feel you’re not allowed to complain about anything because you’ve got the thing you always wanted.

I still felt like an imposter after I had my DD. I clearly remember my mum turning up to visit and I just cried in her arms that I obviously wasn’t meant to be a mother as I was finding it so very hard.

You’re in the thick of it at the moment but it will get better, I promise x

@LittleLegsKeepGoing thank you so much for such thoughtful and kind message. It resonated so much with me, especially your words about ivf, thank you again. I think I definitely know it deep down but just got so overwhelmed today and could not see things in a better light.

I am also so sorry for your loss. I also lost my dad when he was only 58 but it was incredibly quick and unexpected, a complete opposite to what I understand you have gone through. I am rubbish with words but having read up on MND i have the glimpse into what you had to go through. Has it been long since his passing? How are you doing now?

Sending love and sympathy OP. I just wanted to add one small thing - I too had progressively weakening joints/ligaments after my first child. It started in my ankles, and progressed to knees, hips and wrists and I found it really debilitating and upsetting - after loads of googling I found out that some of the hormones from birth (which make everything stretch and loosen) can linger and have effects on your ligaments for months afterwards - though it’s all chronically underesearched and they don’t know much about why. No treatment, it just gradually gets better. That’s then what happened to me.

I was going to suggest an osteopath, if you haven’t seen one? If you happen to be in London the Osteopathic Centre for Children treats mothers and babies side by side. I went with both my kids - for a long time with the first one who had more issues - and they were wonderful at treating him. They treated me as well alongside my second baby, and it was amazing - wish I had done that with my first as well. Their kindness and calm good sense also REALLY helped calm my anxiety.

My son was diagnosed with ASD at 3 and I had zero concerns at your sons age. My son was developing wonderfully so please don't worry. Nothing concerned me until he was 14-16 months. If IVF was going against 'a greater will' why has science given it to us? Because people like you was meant to be a mum. That's why. Don't beat yourself up over that.

My experience with a difficult birth that resulted in potential brain injury to my DS was that I found it incredibly difficult to enjoy the first year of his life while I waited for him to be old enough to be assessed in a meaningful way. The doctors would unhelpfully either shrug, say yes he was clearly struggling, or yes he was clearly fine, which was awful. In the mean time I drove myself crazy googling everything I could find, and jumping to the worst case scenario every time. It didn't make bonding with him harder, it just meant that I had a lot of anxiety all the time and was very pessimistic about the future. I had therapy for general anxiety which helped a bit but PNA isn't really addressed or supported in the same way that PND is, in my experience.

There really isn't much you can do at this stage to evaluate his development, as there is such a huge range of normal and autism and other developmental issues aren't assessed until key milestones haven't been reached, typically after a couple of years. It is very difficult to ascertain a baby's development at 6 months. But even if your little boy has a developmental delay, he is still your wonderful little boy. It sounds like your bond with him is strong, but you're struggling to be in the moment with him because your anxiety is standing in the way.

I also have a neurological condition which can be life limiting sometimes, but I have tried to come to terms with the idea that my life was always going to turn out like this, and to relinquish control over it, which helps with the anxiety. You sound like you've had so much on your plate that you aren't in a position right now to fully enjoy time with your new family, which is totally understandable. I hope you find peace as time passes, and that you find a way for your anxiety to hold less of a grip on your life xx