So very sad, so very much alone

So, after our daughter died, saw the consultant, he wants more tests done (after 9yrs, more!) Sat waiting for my op assessment after constant chasing of referrals for these tests so finally got that all arranged (which is right next to fetal medicine so surrounded by bumps), in order to find out what treatment we can have and get it started as soon as possible for us. Counsellor from our clinic has now advised me there's no chance of treatment before next year and that I'll turn into a "basket case" if I don't return to work soon, that our expectations need adjustment, she can't see me more than once every 5 or pm weeks, and I have issues with spending money. My baby died not even 3 months ago, and I work with children. It's a very difficult situation for me. I struggle spending money because for years it's been save save save for treatment, and at no point has anyone told me that there is no hope of treatment before Xmas, so yes, actually it's a shock to us both and we're devastated by it. Can't help feeling no matter how supposedly well intended her words were, that actually she is unable to empathise with a grieving mother and father. I also feel using the words basket case, well, it's inappropriate at best.

It's tho lack of information, the constant fighting to get the information we need. I'm devastated

8 Replies

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  • She actually said basket case to you! OMG how insensitive. She might well be well intended but that is seems rather unprofessional to me, there are better ways to phrase her concerns. Adjusting expectations is all well and good but that's something that could be looked at in sessions, perhaps with another counsellor? What's her concern about you spending or not spending money? I assume that you do buy things, clothes, food etc but are not chucking your money at unnessary treats or getting into debt? Does she know how much it costs?!? I've not bought things because I'm keeping an eye on the pennies as we've had to pay for everything.

    I can understand your devastation and shock following today's visit. I wanted to get going straightaway after our first failed cycle but due to side effects we had to have 4 months between the 1st and 2nd goes. On reflection it was probably a good idea to have the extra time to recover emotionally and physically. But that's a decision you and your other half take with input from your medical team.

    Take care.

  • Yep, her exact words were you'll send yourself crazy and become a basket case. Considering g admitted that the over 9yrs of infertility have taken its toll on me and led to a time of depression for myself, but I've spent that last few years working on myself mentally and physically waiting for nhs treatment etc, it's been tough but felt in such a good and strong place before our daughter died. It's shaken us more than I can possibly explain, it's so very different to all our previous losses because I got to know Annabelle even for a short time. We've spoken to many parents at SANDS, and one thing that is often said to us both is how hard it must be to not be allowed to choose when we try, for that very personal decision to be taken out of our hands, as many of the parents of stillborn babies choose to try again soon after birth (so long as physically ok obviously). The SANDS support has been amazing. The kick in the teeth is that if my cycle was about 8 days earlier, we'd be starting treatment in December after getting results in November. Thank you so very much for your kind words x

  • I've got a history of depression and have had counselling, medication, mindfulness and lots of reading and exercises to try to help.

    I'm finding this round of treatment harder emotionally than our previous 2 cycles. I'm glad I stayed on the medication as a preventative measure.

    I haven't experienced still birth but have lost 3 babies through miscarriages so I can imagine the loss and devastation must be absolutely awful. The support from SANDS sounds really good.

    It's so unfair when our bodies don't cooperate with the medical schedule, that's my issue currently, and although logically I know that the medical advise is correct it's not what I wanted to hear as I just want to get on with the treatment.

    Take care.

  • We also lost 3 tiny ones of the years, then had the two embryos put back, 1st tiny one lost early on and then obviously Annabelle. I won't say it's worse to loose a child later, but it's so very different hun, it's ripped my heart in two, and feels like we're dealing with all 5 losses at once. Very hard to accept that we have to wait for further testing after all these years of being told I was technically clear of issues, to now be told there could be something wrong that caused Annabelle's and possibly the other tiny babies to die. It's excruciating. Feeling very let down by the nhs for not having these tests done earlier

  • I can understand you feeling let down. The tests might mean they can do something about the issue or they'll give you peace of mind for the next round.

    I hope that the appointment with a different counsellor helps. We had a couple of sessions at our first clinic that weren't particularly useful! I found sessions with a non specialist in fertility issues more helpful but I think a lot of it is to do with the relationship with the person. Hubby took an instant dislike to the counsellor so I was on edge about that as well.

    I think if you've experienced depression you always fear it coming back and I was so ill the first time, but I know what to watch out for and when to seek support. Treatment and loss are really difficult but it shows how strong we are.

  • My OH is very unhappy about the situation, as we had no reservations or worries of returning to the clinic like some have opened up to us and warned us about after stillbirth, and felt we'd get on well with the counsellor, but now the place is tinged with sadness and regret, where it wasn't before our last meeting. We've made enquires with other clinics, ever so slightly longer times scales because obviously they've not seen us before, but once we have the results we will reevaluate where we feel most comfortable being treatment wise, but we certainly won't be returning for counselling with them. He's also very annoyed we were never advised of these tests before by our doctor or previous specialists. Basically from what we can gather it's been the case of well we've found your partners fertility issues, so they just stopped testing. I pray to god there is nothing more to be found, the odds are stacked against us without further issues, but now it's been raised we can't not check! The whole situation just feels to backwards considering my previous history and symptoms. It's frustrating. Wishing you a successful and gentle treatment this time round xxx

  • Hello parentsofangels,

    I'm sorry you had such a negative experience with the clinic. It sounds as though the counsellor was quite insensitive and it seems like she's far too busy to give you the time you deserve.

    I know how it feels to want to steam ahead with treatment. I felt the same way last year but was advised by the private clinic we saw to keep trying a bit longer and we were still waiting on our NHS appointment.

    In the end I used the time before starting treatment to get myself into a better place. I had (private) counselling sessions, started tai chi and began to enjoy life again. With hindsight, when we did start treatment, I was grateful for the time I had and felt I was better prepared emotionally; calmer and more relaxed.

    I know counselling is not cheap (my sessions were £45) but, I can't put a value on the improvement they made to my wellbeing so, they were worth every penny! If you have the money (even if it means dipping into savings) then I would definitely recommend some private sessions. Just make sure you get someone who is registered.

    Good luck and take care of yourself x

  • A private clinic years ago told us to wait, try again and go with nhs, so whilst waiting for nhs waiting lists I've worked on myself mentally and physically to get to that stronger place I achieved prior to treatment. Obviously loosing Annabelle is a life long grieving process. We are lucky enough to be in touch with SANDS who have been very helpful, but most have admitted they would have struggled being told they must wait before trying again. Guess that's just another bug bare of infertility. I chose to use the clinics counsellor assuming she would have am understanding of the Ivf and child loss issues facing us. He's comments have not helped my state of mind, as if I wasn't scared of being depressed again enough already eh! Trying to put her comments to one side. I know I'm not ready to work at my current employment yet, if ever. I'm not saying I can't work, obviously I will work again but I'm saying I'm unsure and need time to work things out.

    I have an appointment with a counsellor who specialises in child loss, pm hopefully that will be more beneficial. The money issue, as you say, I've spent years not spending as much as possible in order to build up savings and enjoy time with my partner (he works abroad for the same reason, so we are precious of our time together). We were discussing a holiday, that's when I was a bit worried about the money as we've used so much of our savings on my partner being home during the first cycle and obviously time after being home after Annabelle died. Hope your doing ok xx

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