"Complicated twin pregnancy and neonatal stay"

I was pregnant with monochorionic diamniotic (MCDA) twins and was being looked after by Northern Trust and at 19 weeks we discovered they had Twin-to-twin transfusion syndrome (TTTS). We had to rush to Fetal Medicine in Belfast to confirm and then fly to London for surgery. The staff throughout were amazing and comforting.

After the surgery we were seen weekly by Fetal Medicine in Belfast and the twin clinic in Antrim, things were improving until my waters broke at 22 weeks. I was admitted to Antrim and a few days later I was rushed to Belfast. The whole experience was terrifying, I know the situation was bad but after a few days of no symptoms of labour the doctors starting telling me the worse was going to happen despite nothing changing with my situation, this was I felt unnecessarily upsetting, didn't help it was also my birthday. I was offered the steroids at 23+3, there seemed to be a lot of confusion over what twins waters had broken and it was quite upsetting. I was re-scanned by Belfast when I arrived but they were unsure as both babies had good fluid around them. 

In Belfast I was admitted to E ward and put in a side room, the staff were amazing and looked after me so well - Maria, Hannah, Deborah and Maeve, as well as Leanne and Kirsty, there were many others but unfortunately I cannot remember their names. The facilities in E Ward were not great, one shower was closed the entire time I was there and often one of the 2 other showers would also be out of order, probably holding out for the new building instead of fixing, but 1 shower for 20 beds was not good.

I remained on E Ward for weeks, being scanned daily by Helen and weekly at the twin clinic. Helen was amazing, she always made sure I had plenty of good scan photos, she always used their names, it meant so much when we didn't think they'd be coming home, she explained the results of the scans every time and celebrated with me when things started to look better. Dr Murnaghan at the twin clinic was also reassuring without being patronising, she explained the situation well and I always felt better after a twin clinic appointment. 

At 28 weeks I started bleeding and passing large blood clots, I was sent down to delivery, but as it was a weekend they were trying to hold off as long as possible, the bleeding eventually stopped. On Monday I went for one of my usual scans with Helen where she told me I'd likely be having the twins that day as she suspected Twin Anaemia-Polycythaemia Sequence (TAPS). She comforted me as I cried. She came down to delivery suite with me.

My babies were born via emergency c section weighing 667g and 1171g, they were sent immediately to NICU and I was in recovery, I lost a lot of blood and was unable to see the babies for a while, but due to staff shortages this wait was made even longer.

I was asked to wait until after shift swap, then I asked again a couple hours later and was told one of the babies was coming off the ventilator and to wait. Then I heard nothing for hours and no midwife came near me.

I tried to find the number for NICU as I was terrified the worst had happened. The midwife returned to me in tears and she said she would call them but she went out of the room again and didn't update me.

Eventually I was told my midwife was in another delivery and I would be moved to the ward. I was assured the babies were okay but I didn't believe anyone as I still wasn't able to see them.

I was returned to E ward, I cried as they wheeled me down to the shared ward like I was any other new mum. I could hear the babies crying unsure if mine were actually still alive, the staff on the ward were shocked and helped me into a wheelchair so I could see my babies finally 14 hours after having them.

I spent 2 days on the shared ward, I spent my time in NICU or with headphones with a curtain around me as it was so painful being amongst all the newborn babies. Women with babies in NICU should not be on the ward with babies. I left as soon as I could. I was distraught leaving and was comforted by Hannah and also Maria, who sat with me and shared her story. I will be forever thankful to the staff on E Ward. 

My twins spent 31 days in the Royal Neonatal unit, where parents are not as involved in care, details about your child's health are not given to you. One of my twins had a large Patent ductus arteriosus (PDA) which I discovered when she was moved to Antrim despite me asking in the Royal did she have one!

The nurses seems very wary of getting out my smaller twin, I think this was because they were new. Everything changed in Antrim, I was told everything about my babies, I had plenty of skin to skin with both babies, it was easier to express for the twins and overall was a better experience.