On paper, their birth went to plan, an early arranged C-Section at 33weeks. Then straight into NICU (pre-warned) until they were well enough to go home. But what happened along the way was very hard for me and my family. Firstly, the reason for their early entry into this world was that we had TTTS - Twin to Twin Transfusion Syndrome. From 18 weeks to 29 weeks when it had miraculously corrected itself (my body formed another blood vessel that counter-balanced the blood flow). But I was still informed that even though we were “out of the woods” that it could come back anytime, especially during birth and could be fatal for the babies. I had to make a decision, and with no support or understanding, I went along with the suggestions made to me and we booked in for a Section. The one thing i did do was refuse they came out until 33 weeks (it was being suggested before 30 weeks)!

I prepared for their birth using hypnosis and hypnobirthing techniques which really helped with my mental state and physically staying calm and balanced for my babies wellbeing. I’m sure it helped to lower both my and their cortisol levels too; so vital as the pregnancy had been very anxious.

What happened after their birth was something I couldn’t prepare for and that was the physical pain in my heart when I eventually got to see them and they were on opposite sides of the NICU with the wires, feeding tubes, etc. I was desperate to hold them and have skin to skin, but no-one allowed this until the following day and I had to work out how as soon as I was able to stand and pick one up. My C-Section wound was large and they’d forgotten to give me morphine but the power of the mind over the body and the desire to be with and hold my babies was stronger than the pain).

Nobody explained about the feeding tubes and why they had to have them. The tape used to make their skin so sore and they’d often cry because of the tubes coming loose or out completely and the nurse would have to put them back in each time which was painful for them. I was so upset by this convincing myself it would have an affect of them for life. Infact, one of them has a larger nostril than the other - slightly malformed, and i’m sure it was because of the tubes.

I’d do my best at feeding times to latch them both on at the same time, whilst feeding them via a syringe attached to the feeding tubes. This was a skill I had to learn pretty quickly and my husband would help by making sure the babies didn’t end up rolling off the cushions onto the floor. The chairs were not comfortable and we would bring in extra pillows and blankets to make it a more snuggly environment. It’s hard to get milk flow going in such a harsh, sterile, unloving environment and I now know that of course, my oxytocin levels must have been pretty low. At least the skin to skin that i’d fight for would make a difference. The picture showing them at my breast was the first time we’d managed to get them together to feed and they reached out to touch each other and looked at each other. It was a magical and emotional moment.

Reaching out to each other while breastfeeding for the first time

However, nothing could prepare me for the pain that came next. After 24 hours we were told I had to go home because they needed my bed. After a twin C-Section this is unusual, but after a twin premie section with them still in the NICU, was just cruel. I could only just walk at the time and thinking back now, I’m astounded this was allowed to happen. The pain of having to leave them and drive the 40 minutes home was unbearable. It felt primal and I howled like a wounded animal. I’d never experienced agony in my heart like it and have never since. It felt like I was losing them. My heart bleeds for anyone who has lost a baby, and I can begin to understand how it must feel. That pain will stay with me forever. My poor husband couldn’t console me and I couldn’t be a mother to my 2 other children, which must have worried and upset them all dreadfully. The 40 minutes drive felt like 4 hours. Each night I had to leave (and be mum to my other 2 boys), and each morning we would drop them at school and race into the hospital. I used to express through the night at 2-3 hour intervals to stay in the cycle. I was terrified my milk would dry up and as it was the stress meant it was so hard to keep it up. I’d keep a muslin that smelt of them and a photo of them by the bed to help keep the milk flowing, but the tears would flow too. The anguish was so hard to bear. It used to leave me having nightmares that they had passed away in the night without me there.

Each night, leaving the hospital to go home to my boys and husband felt alien, yet it was all that i’d known before. The pregnancy with TTTS had meant that my focus during those 3 months had been on keeping my babies alive, and now it felt the same, and was so hard to even consider the rest of my family. It breaks my heart to think of my boys, then 4 and just 7 (a week before), and how hard it must have been to go through it all with me.

My routine was to get to the hospital as quickly as we could after dropping the boys at school, rushing into NICU with breath held until we knew they were ok. I’d feed them straight away and would often be told not to pick my babies up or leave them to sleep, which would result in a lioness roar from me (I know about Oxytocin and all it’s good for). Not once was I offered help or assistance. Certainly no offer of emotional or mental health support. We were shown the parents breakout room and the expressing room and left to our own devices, often feeling like we were in the way if we hung around our babies for too long. To be honest, the parents room was solace from the noise of the NICU and the events occurring there were scary and often more heartbreaking.

Once they had brought the twins incubators next to each other, at least it was easier to manage, and then when they were put into SCBU, the day’s were long and hard with all of us doing what we could do ensure our babies thrived enough to be “allowed home”. My husband had to go back to work after 2 weeks, so I was relying on relatives who came to stay a short while (they’re not the kind to want to stay for long), and friends to ferry me and the kids to and from hospital and school. It was tough and I felt like I was constantly having to ask, beg and borrow, which added to my emotional load. The guilt I felt being at home and sleeping in my bed at night while my babies were in hospital in that environment being cared for my strangers when they cried was phenomenally painful too. I felt like I had failed them and the feelings that my body had failed them in pregnancy where exacerbated by this.

We finally got into the “parent room” where I stayed on my own with the twins for 4 nights and days desperately trying to get them into the “safe” zone - they were jaundiced and one was losing weight. This was so upsetting and I basically exhausted myself caring for them on my own (hubby was at work and then looking after the boys at night), which meant no sleep. The worry that they would have to spend longer in NICU under the lights and noise was overwhelming. Nevertheless, after 2.5 weeks, I got them home. (Some parents had been caring for their babies in SCBU for 100+ days, we were lucky).

Leaving hospital felt terrifying but amazing. Free to be the mother to them i’d craved to be and arriving home with them was incredible. Seeing my boys come home and cuddle them for the first time (but i remember being very harshly protective of them too), and being a family unit of 6 in our own home was all i’d desired. It didn’t last like that for long. I’ll begin my breastfeeding and reflux story in another post…

My point in telling you about my twin birth is to highlight the urgent need for more help for parents with babies in NICU and SCBU. If there had been a sympathetic word or two, demonstrations on how to care for babies with all the wires and tubes, proper explanations of what’s going on and more efforts to understand what we’d been going through it would have helped a little. Then, sessions with a psychotherapist starting while I was there and ongoing for months afterwards would have prevented the PND that commenced. I remember having to wait for ages for the doctors to do their rounds and then not discussing with us the outcomes for a while, so perhaps this can be dealt with in a more humane fashion too.

The shock of having a baby in NICU and the sadness and desperation of having a baby in SCBU really needs to be dealt with by an empathetic, sympathetic, kind and caring member of staff, specifically appointed to do just that. I appreciate that staff are often doing the best they can in circumstances and an environment that doesn’t lend itself to all of the above suggestions, however, having someone specifically for that role would mean that parents would hopefully be prevented from developing other mental health issues further down the line and would feel cared for and understood at the time.