It has been a really difficult two weeks and so I wanted to add to the wealth of information on Mumsnet to help prepare any others unfortunate enough to be in our position. It really helped us through our fetal anomaly experience reading the experiences of those before us on here, and it’s hopefully going to help me to record it. It’s a long one as I’ve waited until the end (hopefully) to note this all down but tried to include information about each step. Though beware reading too much on Mumsnet as it can become overwhelming and we’ve learnt no two experiences will quite be the same. I’ve also been quite graphic with the termination as it’s quite raw still. I don’t want to upset anyone but also need to note it down and figure out if that was normal or if we had a particularly bad experience.
Here goes.
I had read about the nuchal fold and dismissed the possibility of us having a Downs child as I’ve always considered myself to be healthy and lucky and at 37 years old just a little extra at risk. Both of us were anxious but hopeful.
Big surprise on the Wednesday sonogram with a NT measurement of 7.8mm, an obviously huge amount of liquid on the back of the neck compared to the acceptable 3.5mm. All the while our baby wriggled on the screen.
I cried in the sonographer room after a few moments of disbelief, my partner stuck behind a plastic screen because of covid-times. We were then given a private room to fill in some forms and then I made my way over for a blood sample feeling quite lost.
Heading back home there was more crying, looking up others experiences online, what happens for a termination, trying to prepare for all outcomes. That Wednesday afternoon we received a follow up call from the fetal medicine unit at the Whittington getting us booked into another scan at UCLH with their fetal medicine unit.
Friday’s appointment at UCLH was a warmer experience, perhaps because we were more prepared for the bad news but definitely because of the calmer, more specialist and more sensitive environment. The sonographer at UCLH coo-ed about the baby pointing out feet and hands to help us feel comforted but also pointed the NT measurement out, now at 8.2 – 8.5mm. The consultant came in, then we were also joined by a midwife. Our combined result of 1:2 chance of Downs was mentioned (printed notes saying PAPPA 0.6 MoM and bHCG 6.7 MoM). The consultant added to the near certainty of Downs that there was generalized hydrops around the baby, a result of potential further genetic anomalies. Independent of CVS results these hydrops are associated with 50% increased chance of neurodevelopmental delay. ‘24/7 care’ and ‘severely handicapped’ were both mentioned.
The midwife then took us to another room to talk over what had just been communicated, gain our consent for the CVS and provided comfort without any pressure of which route to go down. I took all of this in quite well after slowly accepting that a termination was most likely over the Wednesday and Thursday. My partner still had hope though and we both wanted to know the full reason so we went ahead with the CVS and he requested a 17-week scan to see if the hydrops/fluid had increased.
The CVS was taken moments later back in the sonographer room so that the screen could guide the needle. The consultant was generous with the anaesthetic and so the oddest sensation was when the needle went through into the placenta. It may not be necessary advice in this distressing situation but the team or myself made an amusing comment whilst the needle was still in me and a slight laugh was a bit unsettling whilst it was still inserted.
On the Monday after all this my partner’s mum had a stroke. We are feeling cursed at this point. We had told her about the pregnancy, and my family, before Christmas, a month and a half earlier, to give them all a bit of hope after a year of lockdown and separation. We know a lot of people who have shared their news before the first scan. We will be doing our best not to share news of a future pregnancy before we’ve had the first scans. For me I found it hard to manage my family’s anxiety about me whilst processing my own grief. Lockdown helped in a way because me and my partner could isolate and process our thoughts, grieve without having to be social. On the flip side we could be open about why our comms may have seemed somber or short and it was nice to know we were in people’s thoughts. Lockdown was horrible at the same time though because we couldn’t travel north and go visit his mum in hospital.
The following Wednesday the results from the CVS confirmed Downs Syndrome. We are still waiting on the micro array results from that sample.
With the Downs confirmed I booked a termination first through BPAS for consultation call with Homerton Hospital. This would have been a surgical termination. The call was scheduled for the following Wednesday and so we still didn’t have a good idea of when the termination itself would happen. For certainty I therefore opted for medical termination at the Whittington starting Tuesday with a ‘kick off’ pill and then actually delivering the baby on Thursday.
On Thursday (yesterday as I write this) I was regretting this decision. With surgical termination I had fears of placental scarring and the chance of seeing the baby taken away. The medical route seemed a little more natural and respectful.
We were in a private room for the whole day, 9:20am to 6:30pm. Some women will deliver after one round of the 2nd day pills but side effects of the drug are diarrhoea and vomiting, both of which I had and neither of which I’d been warned about.
I was told I would be given lots of pain meds to help me. The first round was paracetamol and ibuprofen so the second lot of misoprostol was easier on me but I still wasn’t having contractions, just cramps. The third lot of misoprostol at around 4:30pm finally got me passing the pregnancy. I’d been given codeine for the 3rd round but I had diarrhoea and vomiting again so that pain relief was lost to me. I’d advise saying yes to anti sickness aids.
I had a cannula in my arm for the day and it was only used for the anti-sickness and I think for any blood transfusion that might have been needed if it came to that.
I had maternity pads, entertainment and we were brought lunch. I forgot my slippers and missed them. I had a spare pair of trousers that were comfy too.
Something I feel you should be prepared for if you are going into a medical termination is that you will likely be given a commode. The process wasn’t really explained that well to us and we were only checked in on once an hour or so. I had diarrhoea in that commode, with a bin next to me for vomiting into at the same time. On that same commode but with a different cardboard bowl I delivered the baby after half an hour of pain, contractions and breathing that happened to be what I’ve seen of antenatal sessions on TV. This was whilst I was being given a round of anti-sickness medicine into the cannula on my arm so the nurse just happened to be there whilst the baby passed otherwise we were just left to it.
I hadn’t been sure whether I wanted to see the baby after delivering it but there was little ability to escape that option in the circumstances. I didn’t feel the baby move inside me, just contractions, but suddenly there was a ‘thunk’ in the cardboard bowl and I checked between my legs to see what looked like a thin pair of legs. This was followed quickly by the placenta thankfully. But I was concerned about whether I had peed in the bowl before or after the last bowl change and was distressed about the baby being in that bowl underneath me, unable to move whilst the anti-sickness was being put into me.
My partner had been a star through it all. He got me water, helped with the pedal bin whilst I vomited, comforted me and I didn’t want him to see me give birth for the first time to a dead baby, especially not when he was going through all the worry for his mum. The day would have been very difficult for me without him though. He saw the baby in the cardboard bowl, amidst and covered in the blood, in a splayed pose so we could tell the sex.
Once taken away I wasn’t sure I wanted to see the baby again after that but my partner thought it would be better to have a more pleasant memory of the baby and he was right. The nurses were all kind but the most sensitive part of the day in terms of a TfMR was that the baby, now cleaned, was brought back to us in a woven basket and in a little white pouch that resembled a mini-cot.
We were quite numb and emotionless by now despite this being such a horrible and momentous event. There were questions about the cremation, whether we wanted a blessing and then we had to wait for a doctor and registrar to confirm that the whole placenta was out and that I wouldn’t need surgery to recover the rest.
Today I’m feeling OK. There’s still some stomach aches here and there. I’m feeling some relief that we can move on, the baby is no longer going to grow without hope, I can feel healthier and we can focus on moving into our new house. One of the few positives is that I love my partner even more having been through this together.