Surprise, Stress and Sorrow-A Missing Page?- April 2013

After the initial high of finally getting the positive test and briefly allowing ourselves to contemplate due dates (6^th December 2013), possible names, maternity leave etc it was not long before the worries set in. In the early pregnant days I had some minor cramping and twinges but was told that this was normal, that it was the uterus stretching etc. I had minimal symptoms, a need to drink more water and a hearty appetite. I had arranged on the day I was to notify my clinic of the positive result (16dp5dt or 5w) to also have a beta blood test done at the GP to measure the level of the pregnancy hormone HCG as my clinic does not do this test. The test was done that morning but because the result had to be sent to an external lab, it was a number of days before this came back. The 16dp5dt result was 1051. The number on its own did not mean very much as with HCG it is not so much the number but the way that it rises which is important. The following week I felt very little symptom wise and was a bit concerned. Then began Beta Hell. I had the 2^nd blood test 6 days after the first and when this result came back it was 1775. This immediately set alarm bells ringing in my head as the number remained very low and was not in any way doubling in the 2-3 days generally expected at this stage. The GP tried to reassure me and said HCG is massively variable from one person to another and once it hasn’t stalled or started to fall we should keep hopeful. I had another test 5 or 6 days later again and this one came back at 3498.

6w5d Scan

On the same Wednesday  as this third test was taken I attended for a private  early pregnancy scan at a nearby medical centre. The GP had cautioned me against going for a private scan too early as sometimes not much is seen but I could not wait. The day I went for this scan I was technically 6w5d pregnant. The sonographer initially did an abdominal scan and located a single pregnancy sac. She then got me to empty my bladder and return for a transvaginal scan so that we could get a better look. She spent a bit of time positioning the probe and trying to get a clear picture. She said that to be honest she wasn’t very happy with what she was seeing. The sac appeared small for where I should be and there was little evidence of much else. A mass inside the sac was pointed out as possibly where the embryo had grown for a while but had possibly arrested. No heartbeat was detected. She called this an anembryonic pregnancy or what used to be known as a blighted ovum.  She said however, that I should remain on all medications and hold out for my clinic scan on 26^th April (8w). Of course the tears started to fall even though I was half expecting this result from the poor blood results. The sonographer was very kind, told me there would be no charge for the scan and before I left, said she hoped that I would be back another time for a happier scan. If the scan had been a positive one I would have got pictures and a dvd it seems. I went to the bathroom at the medical centre on my way out and bawled my eyes out.  I texted my husband, who had been unable to come to this scan due to work, and then texted a couple of close colleagues who knew I was going for the scan. My husband rang me back and made arrangements with work so that he could drive in to collect me.  As I left the medical centre into the afternoon sunshine, it was like walking in a daze, people were going about their day talking and laughing and it felt like I was looking at them through a window or from a distance. I passed a lone busker playing ‘My Way’ on the saxophone and the tears started to fall. I didn’t care who was looking. To be honest, nobody was.

I waited at an agreed place to meet my husband and after a hug we made the journey home in near silence, with tears running down my face periodically. Once at home I changed into comfy clothes and we sat on the sofa and I cried and he looked thoroughly sad. I opened the large Easter Egg that I hadn’t touched due to being cautious with my caffeine intake and demolished half of it. We then put on a few episodes of ‘Last of the Summer Wine’ which was probably the most gentle and inoffensive comedy I could find. I texted some close friends to update them as they knew my situation. We updated the small number of family who knew our circumstances, this was the hardest part. I updated my twitter account and got lots and lots of lovely messages of support from people there. I wasn’t able to respond individually as I was just so crushed but posted general replies later. My husband’s boss gave him the option of taking the next day off but I decided to go in and so did he. I did not want to be alone with my thoughts. I have two colleagues in my section at work who know my situation and they were tremendously supportive. Having to tell people this gloomy news was gut-wrenchingly painful.

The following Monday I went back to the GP for a 4^th blood test and updated her on my scan. We discussed the possibility of a ‘missed miscarriage’ whereby the baby arrests early but the body doesn’t recognise it and the support structures are still there and HCG continues to be produced. This would account for the fact that I had no bleeding or spotting whatsoever (though maybe the FET medications I am on also prevent this) and the HCG levels continued to rise, although slowly. I raised this myself and the GP said she had experienced it. It’s apparently relatively common. The GP offered to give me a note for work but I declined. I preferred to keep busy and save the note for later if needed. The final blood test came back at 5784. The GP conceded that it was a bit lower than where they would like it to be in the 7^th week. There was nothing to do now but wait for the clinic scan on the 26^th.

The waiting of these 3 weeks since notifying the clinic of the positive  test was even worse than the 2ww itself. I had decided to get the blood tests done and the early scan to help me cope and to give me reassurance but they made me more stressed in the end as they signalled that something was wrong. If I hadn’t gone for these I would have wandered into my scan on the 26^th thinking everything was fine and then possibly be faced with devastating and unexpected news, as opposed to devastating but expected news. Which is worse?

I found I could no longer join in with my twitter cyclebuddies on early pregnancy chat as I had no symptoms to share and felt that I had a failing pregnancy. As they moved on to their own scans with happy results, a little bit more of my heart was broken every day. I was completely delighted for all of them but just so devastated for me, after being through all this and coming so far, for nothing but more heartbreak. The usual ‘Why Me?’ question was asked.  I just found this whole period an incredibly lonely time.

As Friday the 26^th approached I actually got a bit calmer. It had got to the stage where I was no longer able to cope with being in limbo and I needed to know an outcome, even a negative one, so that I could move forward in some way. After struggling to sleep and having weird dreams, I finally started to sleep a little better. I still felt very tired, probably a combination of emotional exhaustion and pregnancy hormone related. How ironic.

On the morning of my clinic scan I rang one of the clinic counsellors and discussed my situation with her. She was very compassionate and said that she would be on standby that afternoon if either or both my husband and I wanted to talk to her after the scan. I said if this has failed, I would love to know a reason, though often there will be no reason. I said that I know a lot of the time it is simply a chromosomal or genetic issue. The counsellor said one of the doctors had compared it to a book. If you have a book but there is a missing page, you don’t have the complete story. Sometimes the embryo has a ‘missing page’ and it is crucial enough to not allow it to develop.

I am just perplexed that in my fresh and two frozen cycles, after having 5 good blastocysts, all of which thawed, 3 of which were naturally expanding at the time of transfer, why 4 did not stick and the one that did immediately ran into trouble. Is it me? Is it an egg quality issue, a sperm quality issue. Who knows?

8w Clinic Scan

As the time approached for the clinic scan my stomach was in knots. I walked the 30 minutes or so to the clinic from my office and had arranged to meet my husband there as he was further away and travelling by car. I arrived a bit early and checked in. The receptionist gave me a beaming smile and wished me good luck. I said I wasn’t expecting good news. I visited the bathroom to empty the bladder as this was to be a transvaginal scan. A nurse came to get me after 5 minutes or so and I followed her, not quite able to catch her to let her know my husband  had not arrived yet. However, in the scan room I told her and she said that we would wait for him. I told her my concerns about not expecting good news and why and gave her a copy of my blood HCG results for my file. She took that on board and  went out to look for my husband, after a time both arrived back in and she left us to get ready. I burst into tears and said I didn’t want to do the scan and my husband looked like he was about to cry as well. I got ready and waited for the nurse. She arrived back in and we proceeded with the scan. She explained that they were looking for the gestational sac, yolk sac and fetal pole and a heartbeat, this being an 8 week scan. She pointed out each of the items but noted that they were not looking as they should, too small and that she could find no heartbeat. She asked us to wait there and said that she would get a doctor to repeat the scan and confirm this. I sat up again with my knee-socked legs dangling over the edge and my husband stroking my back. We could hardly look at each other in case we burst into tears but he rested his head against mine.

The nurse arrived back with one of the doctors and he introduced himself and explained what he was going to do and why and asked if we wanted to be told everything as he conducted the scan, I said yes. He scanned even more thoroughly than the nurse had, it was slightly uncomfortable at points. He took various measurements and pointed out the various elements again on the monitor, noting that they were smaller than would be expected and that there was no trace of any cardiac activity. He said that this was indicative of a miscarriage. He took some printouts of the scan. I was asked if I had any bleeding or spotting but I said no, none at all. When the scan was finished, I was told I could get dressed again and to wait as he would speak to us privately.

The doctor brought us into another room and took our file in. I asked several questions, was it egg quality, was it a missed miscarriage, did the baby live long at all, was there any particular reason? He explained that this type of miscarriage is very common both in assisted and regular pregnancies, it is generally down to an issue with the embryo itself when it continues to divide, something in its coding simply goes wrong and it doesn’t have the necessary information within itself to keep going. It is nobody’s fault. Egg and sperm quality may be an issue and egg quality can be an issue in older women but it is not always predictable. He said there were a number of ways to manage the miscarriage, I could wait naturally for it to happen, though this could take quite some time. I could be given a medication to expedite things or I could have a d&c procedure whereby the womb contents would be removed under anaesthetic. He said I did not have to decide immediately, I could take a few days and contact the clinic then. He said although they were satisfied with the diagnosis, I could have a repeat scan. I said for the moment I would like to wait and see. He drew up a letter for me for the main hospital attached to the clinic in the event a natural miscarriage became problematic. I asked should I stop all my FET medicationss and he said yes. He asked if I would like to have a copy of the scan photographs and I said yes. He then went through my file and tried to pick out the positives from the situation, my good response to stimulation, the 5 good blastocysts which was an above average number, the fact that I got pregnant which puts me into a different category of IVF patient. He said from their point of view it was a very good cycle (the IVF1 and 2 FETS combined). Maybe so, but I still have no baby though maybe I should not lose all hope of it.

We left then and went home, ordered in a very unhealthy takeaway and raided even more chocolate, just sat together and were sad and cried. I updated those friends/family who knew the situation and my twitter friends. That night I told my Dad, who had no idea I was even pregnant. He was so sweet and was genuinely sorry and sad for us and deeply concerned. He said he had been praying for us as we did the treatments. Again the having to update people with the sad news was profoundly painful and made me consider keeping future cycles a secret.

Since then I’ve been ok at times and then start getting teary, or panicky or angry or just darkly blue at other times. I have been touched though by the kindness and support I have got. I am still a bit in denial, not quite off all my FET medications and thinking of getting a repeat scan before I decide on ‘management options’.

What next?

So what next? Well it’s totally back to the drawing board. I guess we proceed with our plan b, a move to another clinic where I will have the following tests: immunes, endometrial function test, vitamin d, chromosome test, hysteroscopy. My husband will have a DNA sperm fragmentation test. IMSI and EEVA may be considered depending on the outcome. I will have to start a new fresh cycle now at the age of 41. Not a happy place to be.

I will also request the adoption information/application pack and start the initial paperwork. The application has to be paused if we cycle but at least we wouldn’t have to start all over again with this part of it.

Before all this I need to grieve, and we have booked a short holiday abroad for late May. We hope to also get some overdue painting work done in the house. We will have an enforced break anyway as my body will have to recover it’s normal cycle before I can have the new tests, let alone cycle although the new clinic said they will proceed as quickly as possible. Time is not on my side. I might have mentioned that…

This whole process is so wearing, so full of hope,  anguish and disappointment. After the initial joy of the positive test to the crashing despair of losing our much wanted baby, I feel like a shell, a shadow of my former self. I need to recover a bit of that before we can move on.

As for our lost baby, I tweeted the following, ‘I am sorry tiny angel,  that we could not get to keep you. We would have loved you so much, more than life itself. RIP and hope my Mum is minding you x.’

I asked my husband if we should give our lost baby a name and he suggested Hope. Maybe when we can emerge from these dark days we will be able to take some positives from this experience. But for now, these are dark days.

I will wish that our Hope will be by our side as we pick ourselves up, dust ourselves off and move on somehow…