by Shelley Watson
We found out we were expecting identical twins at our first scan. We were sat down in the hospital and told all about how identical twin pregnancies are much higher risk, and how I’d deliver around 36 weeks. I was scanned every two weeks during the pregnancy, and seen by a consultant at those appointments too. Around 24 weeks, I had a pre-eclampsia scare and spent 7 hours on the delivery suite getting my blood pressure down and around the same time it was noticed that Twin 2 had Absent EDF (End Diastolic Flow) through her umbilical cord. We went onto monitoring every other day and I was told to pack my hospital bag, just in case.
On 15th April 2016, I went in for one of my regular scans, I was 26+1 weeks pregnant. After the scan the sonographer said she was popping to see the consultant as per usual and I went back to the midwives to get my blood pressure checked. Instead of the midwife though, one of the registrars came to see me. She explained that Twin 2’s Absent EDF had now reversed, meaning that there was an issue with the flow of blood through my placenta. It’s classed as a very severe condition and can often result in fatalities in utero.
I was sent to another hospital immediately by ambulance, ready to have a c-section that evening, as our home hospital didn’t have the correct care facilities for pre-28 weekers. An obstetrician came to see us to let us know that we didn’t have to deliver that day, that I could stay in hospital for the weekend, be monitored and to give the babies a few more days. However, it was a very distinct possibility that we could lose Twin 2, or even both twins over the weekend. We were completely unprepared for this news – how could we wait to see if one, or both, of our girls passed away? We decided to go ahead with delivery.
The girls were so small and poorly, I didn’t get to hold them when they were born. They were put in small plastic bags to conserve heat and skin moisture, then intubated in theatre. All I saw was a glimpse of a tiny face swaddled in blankets as the travel incubator whizzed past me. I didn’t even see Twin 2 being taken up to the unit. We didn’t see the girls for around 7 hours after that. They were very poorly and the NICU staff needed time to stabilise them.
When we did see the girls, I was wheeled up on my hospital bed into the Intensive Care section of the NICU. There they were! Tiny little scraps in huge incubators, with shiny, almost translucent skin, and their eyelids still fused together. Tiny little nappies on, which were still too big, and huge ventilator tubes in their mouths. They had tubes going into their umbilical cords, as well as PICC lines. Their incubators were next to banks of syringe drivers and monitors.
Twin 1 – Felicity Rose, weighed 1lb 11.5oz; and Twin 2 – Scarlett Grace, weighed 1lb 7oz. Felicity was very, very white and pale – she was having lots of blood transfusions, as she had very low haemoglobin. Scarlett had an excess of haemoglobin, stolen from Felicity, and was dark red. She was under special blue lights, to help her body process and break down the excess haemoglobin.
Because they were so early, their lungs weren’t formed enough or strong enough to breathe for themselves. They had been given several doses of a drug (surfactant) to help their lungs work and were being mechanically ventilated, on high levels of oxygen. They were on morphine, special liquid nutrition (TPN), antibiotics, diuretics, blood thinners and more.
They were too poorly to be held, too poorly for milk and had very little body fat. Their incubators were hot and humid – condensation dripping down the sides. They had a nurse each to look after them – skilled and compassionate, who made up their little doughnut-shaped beds with infinite care, picking the softest sheets; and apologised to the babies every time they took blood or had to move them.
I was lucky to be on a unit that was “breastfeeding friendly”, and had access to donor milk. I didn’t realise until a while later, but not all NICU units are like this, or have access to donor milk.
Prior to my emergency c-section, I had wanted to breastfeed, but now, I assumed I wouldn’t be able to. I’d had no skin-to skin, no ‘golden hour’, no first feed of colostrum.
Luckily, the nurses put me straight – of course I could feed my girls. There was an expressing room in the unit – 2 big hospital grade pumps and 2 hospital ‘comfy’ chairs and a sink for cleaning your pump equipment. One of the nurses showed me how to use the pump, how to clean the equipment, and how to label the little bottles of milk, to be stored in the fridges/freezers on the unit.
I started straight away, despite the fact my girls were too poorly to have any milk. I got scant millilitres the first time, and was disheartened, but the staff encouraged me to keep at it, and eventually I started producing more.
I also found brilliant support on a Facebook group specifically for breastfeeding multiples – many mums in the group had premature babies, and there is a qualified IBCLC in the group. It was great that whatever time you post, there are mums who are online (usually feeding babies!) to talk to.
I expressed milk every 3 hours of every single day for 12 weeks. I’d set alarms for midnight, 3am, 6am to wake up and express; taking my milk into the unit in a cool bag. I’d express by the incubators or in the expressing room with other mums, all of us with our own stories. You could tell who was a new mum on the unit – unsure, shy, confused by the equipment, worried that she’d only pumped 20ml. For us long-termers, we joked about expressing – no shyness for us! We asked about each other’s babies – were they off ventilation? Taking more milk? Had they put weight on? It was like a mum and baby group, but with no babies. We left the unit every night with empty arms, trying to avoid the ‘normal’ families taking home ‘normal’ babies.
At 18 weeks old (4 weeks corrected) we were finally able to bring the girls home, after having oxygen installed at home for them. I’d never tandem fed until we got them home – the chairs in hospital weren’t suited for it, and I needed quite a bit of room for my feeding cushion. They were still really little, so it was like feeding newborns, despite them being 18 weeks old already.
I settled in on the sofa, with boxsets, bottles of water and biscuits! The girls were still pretty small (around 6lb) so needed lots of little and often feeds, including at night. Because I’d been expressing for so long, I was already used to the frequent middle of the night wake-ups, so it wasn’t too much of a shock for me.
Both girls used nipple shields for a long while, which was a bit of extra faff, but since it allowed me to feed them, I didn’t mind too much. I had a couple of face to face appointments with an IBCLC once we were home to get positioning and attachment right.
I fed the girls until they were 2 years and 9 months – and in that time, we had multiple hospital stays for Twin 1 with lung and heart problems, including two Intensive Care stays in hospitals away from home. Despite being separated from Twin 2 for over 20 weeks across a 12 month period, I still continued with breastfeeding for as long as the girls were interested. The end of our journey was actually very gradual and lovely. It dwindled as they started nursery when I went back to work, and one day, they just didn’t ask to feed.
I’m so glad that I persevered in the early days – it was hard work in NICU, but actually it set me up with a really solid foundation for feeding once we got home.