Please do not read if this would trigger anything upsetting for you (pregnancy loss related) – I’m sorry also to post such a lengthy story via social media but it seemed like the best platform to give friends the chance, only if they wanted to, of understanding what has actually happened to us. It has also helped with my grief to be very honest and open. Most importantly of all I really hope in doing so I can be of support to any other family unlucky enough to suffer baby loss – please do not hesitate to contact me if you are suffering with similar – I would love to help.
My husband, Fred and I started our pregnancy journey in January 2018 when we became pregnant for the first time. Sadly at 8 weeks we suffered a miscarriage which was very painful but with the help of close friends and family we got through this patch relatively quickly, predominantly because we decided to get straight back on the wagon and by April 2018 were so excited to realise we had been blessed with a positive pregnancy result.
I began to feel sick very quickly, by week 6 I was throwing up between 20-30 times within 24 hours – I got through this part with the excitement of knowing I was pregnant again and with huge support from my family who sat by the loo with me through the day and night. The sickness continued like this for a further 5 months.
I had an early scan at 8 weeks to check everything was as it should be this time round. Extraordinarily I had been having dreams of twins and it had crossed my mind that since I was being sick quite so much, this might be the reason why as Twin pregnancies double your hormones and can make women very sick indeed. The Gynaecologist laughed when I asked him pre scan if I could be expecting twins and confirmed post scan that it was just the 1 baby. I again was scanned at 10 weeks and the same information was given to me – it can sometimes apparently be tricky to spot twins as one can hide behind the other!
At 12 weeks I went for a scan at the Foetal Medicine Centre which is an incredible scanning unit founded by Professor Kypros Nicolaides – a pioneer and legend in the area of foetal medicine. Luckily Fred came with me at the last minute as when I lay down and the scanning started, the sonographer asked me how many babies we were expecting – we laughed and said “good one, you nearly had us there, we’ve already had 2 scans so we know its just the 1” – he wasn’t laughing and told us we were actually expecting Monochorionic (1 shared placenta) Diamniotic (2 amniotic sacs separated by a membrane) Identical (1 egg that splits) Twins or in our special terms the babies have 2 separate bedrooms but share a kitchen! We couldn’t believe it – shock, joy and histerical laughter ensued as he continued scanning.
After lengthy scanning he told us that both babies looked well on today’s scan, a huge relief. He then, however, filled us in more about this type of twin pregnancy. He informed us that Identical twins sharing a placenta can become more complicated as the pregnancy progresses. The main topic he focussed on was Twin Twin Transfusion Syndrome (TTTS). Fred and I had never heard of this and as we learnt more, were worried but not overly – the statistics sounded favourable – it occurred in about 10-15% of identical twin pregnancies – an 85/90% chance of not developing it, we thought, to look on the positive side. TTTS is a condition particularly monochorionic diamniotic twins can develop because they share a blood supply. One baby (the donor) transfuses blood through the placenta across to the other baby (recipient twin). This can have a devastating impact on both twins if not picked up and even when picked up can still have fatal outcomes (as in our case). Selective foetal growth restriction (sFGR) was also a concern with this pregnancy along with a condition known as TAPS (Twin Anemia polycythemia sequence, another form of TTTS). He told us that we would need extensive scanning to ensure if one of these conditions did occur we could pick it up and get treatment as soon as possible.
We transferred our care to Queen Charlotte’s and Chelsea hospital, one of the best in the country for handling this kind of pregnancy and also crucially nearby where we live – essential as our journey progressed.
Scanning at weeks 14 and 16 showed healthy babies, a little small but nothing to be concerned about as twins are often on the smaller side.
At Week 19 we got diagnosed with Stage 2 TTTS and were told we needed an emergency operation immediately in the form of Laser Ablation to try to save both twins. If we did not proceed with this they warned that both babies had an 80% risk of dying and that this risk was imminent. The statistics for success rates of the operation sounded good – 70% chance of both babies surviving, 85% chance of single twin survival. We agreed and had the treatment that very afternoon – not particularly pleasant for me or indeed the babes – they operated by pushing a probe through the wall of my uterus and directing laser beams down it to seal off blood vessels on the surface of the placenta transfusing blood in an unbalanced way. Obviously any intrusion of this kind carries with it risk of miscarriage, brain damage to one/both twins, the list goes on.
The operation went well and I stayed in hospital to recover and be closely monitored (the highest risk of miscarriage post operation is in the first 24 hours) – after a highly anxious night, a consultant scanned me the following morning and was pleased to inform us that 2 heart beats were present – we were overjoyed.
We had to be scanned far more regularly initially and then weekly post this operation. The 20 week scan looked positive and we were so happy, the only negative being that during the laser ablation, the beams burnt a large hole through the membrane separating our 2 babies so that now our pregnancy was Monochorionic (1 shared placenta) Monoamniotic (1 shared amniotic sac) – they now shared a bedroom and a kitchen!
At the 21 week scan we suffered the horrendous news that sadly our donor twin had been severely and irreparably brain damaged. Our hearts broke. We then heard the further news that in order to give the healthy recipient twin the best chance of survival it would be best to have a further invasive surgery called Radio Frequency Ablation to terminate the life of the brain damaged twin. I would still remain carrying both twins for the rest of the pregnancy as it wouldn’t be possible to remove the demised twin as they were so intrinsically linked and particularly since they now shared the bedroom too. We were devastated.
After much thought and immense pain, we decided to go ahead and have the radio frequency ablation in order to give the healthy twin the best possible chance of survival. Just before they went ahead with this operation, we decided at this stage to find out the sex of the twins – we were having identical girls and we named the donor twin Faith and the recipient twin Constance.
The operation itself was incredibly painful physically and mentally – again they inserted a probe through the uterine wall and directed radio frequency down it to occlude the blood flow in the umbilical cord to Faith. Due to the fact that I was having this procedure relatively late on in my pregnancy at nearly 23 weeks, the umbilical cord was strong and proved difficult to occlude and post 5 rounds of the treatment and huge physical pain on my part (I used gas and air as pain relief) they injected through my uterus and into the heart of Faith to ensure her heart stopped beating.
I was sent home to recover from the trauma of this operation and I slowly began to come to terms with what had happened. Again there was a high chance of miscarriage/ premature labour as a result of the invasive operation. I tried to remain calm and quiet at home gently resting as much as possible over the weeks that followed. I also contacted the Twin and Multiple Birth Association (Tamba) bereavement support service and signed up to their private facebook page which you can only become a member of if you have suffered a bereavement in your twin/triplet pregnancy. The support on there from mothers going through similar suffering has and continues to be astounding. I also have had incredible support, advice and care consistently with all the amazing teams helping us at Queen Charlotte’s hospital – I could not be more appreciative of their help and the time they have spent with us be it bereavement councillors, nurses, sonographers, doctors, consultants, professors, midwives – these people work tirelessly and with so much skill, devotion, sympathy, love and, kindness – the NHS is truly remarkable and we feel so lucky to be on the receiving end of such an incredible and unique healthcare system. Its truly remarkable.
Scanning and care continued as we progressed nervously through the pregnancy. Initially I found it very hard to cope with the fact that Faith remained inside me and that I would have to continue carrying her until 36/37 weeks potentially. I soon realised that it was a blessing to continue carrying the twins together – they needed each other and they belonged together.
I was supported and advised by the hospital over the next few weeks, having regular ultrasound scans and an MRI scan of Constance’s brain performed at 24 weeks which confirmed her brain looked normal for the gestation – major relief.
At exactly 29 weeks my waters broke and we rushed to hospital where I was admitted permanently and advised I would need a C Section as soon as possible to get the babies out as the risk of infection now became too great. I had a round of Steroid Injections to advance Constance’s lung and brain development and was put on a magnesium sulphate drip to do the same.
Constance Faith Schiff arrived at 16.21pm on 11th October weighing 1.019kg. Faith Constance Schiff was born sleeping shortly afterwards. A fantastic team of neonatal consultants, doctors and nurses worked immediately on Constance to check her thoroughly and support her breathing and she was then quickly rushed to the Neonatal Intensive Care Unit (NICU) where she was placed in the high dependency room. Fred went with her.
I went to a recovery room and waited for Faith to be brought to me. This was such a special time which I will always cherish. Fred rushed down from NICU to be with us and with the help of the bereavement midwives, we started collecting memories – her footprints, handprints, videos, photographs. We will never forget the precious time we spent with our darling girl. She was perfect.
In time I was taken to a different ward where I remained to rest and recover whilst Fred went back to NICU to keep close to Constance and be updated by the neonatal team of her progress. The next morning I was strong enough to be put in a wheelchair and taken to see Constance – a truly magical moment.
I started to pump my milk almost immediately for her. She is too young to breastfeed but I pump every 3 hours and then the milk is drip fed into Constance’s tiny tummy.
We left hospital to go home 5 days after I was admitted and now spend our time visiting her, having skin to skin, pumping, hugging each other and getting far too little sleep – welcome to parenthood I guess!
As I write this I am exactly a week on from the birth of our babies. Constance has remained stable and been the tiniest but bravest little trooper. The neonatal nurses, doctors and consultants are in a league of their own. They have monitored, cleaned, fed, calmed, cuddled, sung, and chatted to Constance round the clock. They have provided sympathy and fabulous support to Fred and I. Their energy, love and care knows no bounds. These people deserve every accolade going. Our true heroes.
Constance has, of yesterday, been moved to low dependency – Fred and I are in total awe of her but it is only with the help of every single person along this journey that we are here today. We pray for continued progress for Constance (and maybe for a little bit of sleep!) and we thank everybody for reading our story so far.