Julia's story

At 35, I felt I was relatively old when we started trying for a baby, so when nothing had happened after 6 months, we went for private tests. They showed the problem was male infertility, giving us a very small chance of conceiving naturally, so we were fast-tracked for treatment. We were lucky in that ICSI worked first time for us.

Our decision on embryo transfer

From personal acquaintances and friends, I had the impression that most older women who had a double embryo transfer tended to end up with one baby, so that’s what I expected to happen to us. The clinic told us about the risks of a multiple pregnancy but because I felt my chances of becoming pregnant were not great anyway, because of my age and our fertility problem, it was a gamble we were prepared to take.

We found it hard to deal with the babies being in a special care unit – you can’t hold them or get close to them and we both felt it may have made the bonding process more difficult.

My experience of multiple pregnancy

When we found I was pregnant with twins, I was very concerned as this wasn't the outcome I’d initially wanted, but I came to terms with it quickly and looked forward to our 'instant family'. I found the whole experience nerve-racking as I was aware of the risks of multiple pregnancy, although I assumed all would be well. However, one risk I was not aware of (or warned about) was that of Sudden Infant Death Syndrome (SIDS). The pregnancy itself, apart from my worries, was uneventful but only lasted until the 34th week.

My experience of multiple birth

At 34 weeks, I went into premature labour and had an emergency C-section (the twins presented breech and transverse). It was a traumatic experience, which was not improved by there being no special care cots available at my nearest hospital. We had to wait for five hours for an ambulance to take us to a suitable unit. Apparently, this is really common with twins as so many are born prematurely and require time in SCBU (Special Care Baby Unit).

We found it hard to deal with the babies being in a special care unit – you can’t hold them or get close to them and we both felt it may have made the bonding process more difficult. However, the boys did well and after 5 days we were moved to a transition ward.

Caring for twins

We were shocked at how hard it was to look after two very tiny babies. I was unprepared for the problems specific to premature babies – they are hard to feed and difficult to look after, simply because they are so tiny and delicate. Feeding was 3-hourly and tended to take over an hour at a time... this was around the clock. This was made more difficult by their sleepiness. In addition, they both had reflux, which meant that they couldn’t keep all their milk down. We found the initial experience overwhelming and undoubtedly the bonding took longer than we expected.

It’s so true that you don’t imagine watching your own child die. It was the worst day of our lives.

Losing our son

At 4 weeks, with no prior warning, one of our sons stopped breathing. I had fallen asleep breastfeeding him and woke up to find him lifeless in my arms. My husband did CPR and his heart was started after 40 minutes. Tragically, he sustained extensive brain injury and ended up in PICU (Paediatric Intensive Care Unit), where we watched him deteriorate over the next 24 hours until we had to let him go. We took our surviving son to say goodbye. The shock was immense… our son was gone and wasn’t coming back. It’s so true that you don’t imagine watching your own child die. It was the worst day of our lives.

Further trauma

To add to the trauma, the hospital whisked our healthy son into hospital for observation and tests for the next 72 hours. Apparently, the remaining twin is more likely to succumb to SIDS too in the days following his sibling's death… It was appalling, having to go between PICU and the medical ward, all the time terrified they'd find a genetic problem that would claim our other son's life. When we took him home with an apnoea monitor (breathing monitor and alarm), we were terrified to sleep and had him with us all the time. Gradually, the fear eased a little, but to be honest, I'm always scared that we’ll lose our other boy too. I don’t think that worry will ever go away.

I don’t think we’ll ever recover from this experience, although I guess we’ll learn to live with it in time.

Coping with the aftermath

What makes it particularly hard is that, as the parents of twins, you have to keep going and look after the remaining child. This is near impossible when you want to curl up in a ball and just howl, the pain is so unbearable. Undoubtedly, our son has kept us going, but it was also excruciatingly difficult. His reflux worsened and he was waking hourly through the night due to discomfort. He also had a hernia (again, linked to prematurity), and we had to endure him having that fixed in the same hospital where his twin had died.

Contrary to what a lot of people seemed to feel, it is no less devastating to lose a son who happens to be a twin than it would be to lose one of two brothers who are not twins… Every time we look at our boy, we think of his brother. I see twins in double buggies everywhere I go and I just want to go up to their parents and tell them that I too am a parent of twins. It makes me feel so sad to see my son on a swing with an empty one beside him. There are reminders everywhere and so many things are tinged with sadness. I don’t think we’ll ever recover from this experience, although I guess we’ll learn to live with it in time.

Our message for other couples

We have been incredibly unlucky as SIDS is a very rare occurrence, affecting around 300 babies a year in the UK. However, most research on the subject has concluded that twins are more at risk, with some studies finding that the risk is twice as high for twins compared with singletons. From the research I have done, it appears that low birthweight and prematurity may be significant factors, but no one knows for sure why this happens.

I guess I wanted to tell my story because I feel that it is the very high risk of prematurity in twins that is the true problem. Babies born too early are susceptible to a host of health difficulties. That's 50% of twin births and is a very serious consideration, I know that now.