It wasn’t until I was 20 weeks that I started to be scared about my pregnancy. I had a scan in which Emily was coming up too small which wasn’t a massive concern; it was a blood test that resulted in us deciding to do the amnio. A week or so following I started bleeding and this lasted 2 and a half weeks before Emily was born at 24+5. This wasn’t necessarily connected to the amnio.
It isn’t until you’re in the situation that you start to consider the possibility that you might give birth early and that you’re baby might be sick. At no point do you consider how many families go through the same thing. This is a list of things that certainly blew my mind about having a premature baby.
1. Around 220 premature/sick babies are born everyday in the UK. Meaning they need specialist neonatal care and
2. There isn’t enough care to go around. Bedford is a special care baby unit, level 3, and The Rosie where Emily was born is a level 1. Most units are 3, many are 2, and few are 1. There are only 40 cots available in The Rosie…this level 3 unit covers all of the East of England. Bedford has only 12 cots…and they want to close this unit down!?
3. And then there is the transport for these sick babies. If Emily were born in Bedford she would have needed emergency transport. In the East of England, ANTS is the ambulance service which is provided by St.Johns. There are only 3 ambulances. 3. For the entire region. Emily used this transport three times and received a very cute bear as a momentum of this part of her journey.
4. And one of the weirdest things is that you cant actually stay with your baby and be the primary carer. Lots of people I spoke to just assumed that we could, but sadly not. We were lucky enough to be in The Rosie when Emily was born and even luckier that we were able to stay there for some of the time. The sick children’s trust are able to provide 8 rooms for the families of the sick babies in nicu…but like I said earlier, 40 cots. 8 rooms…40 cots. And few people there actually live in Cambridge. Most families that I met lived an hour or more away. The accommodation is provided on a priority basis and it was really helpful spending the first 5 weeks there, but it was heartbreaking to have to leave.
Bliss – One of the biggest barriers to families is a lack of overnight accommodation on or near the neonatal unit. As a result, parents across the country are having to cut their time with their baby short so they go home to sleep. More than a third of all units do not have dedicated accommodation for parents of critically ill babies who live many miles from home, and only five out of 29 neonatal intensive care units have enough accommodation to meet national standards.
This accommodation should not be a luxury, it is a nessicity! Believe me, I am not blaming the hospital or the NHS in any way.
5. Maternity leave is the next thing on my list. I spoke to HR a week after Emily was born and was advised that my maternity leave started the day after she was born and would be the same length. This is government policy, not my work. My statutory pay is 9 months, the first 3 and a half of which was spent in the hospital. In order to have more time at home properly bonding with Emily I am using holiday; not all mums have that privelage. you may have seen the recent campaign about this online and on TV.
I will add one last thing that I was surprised at during this whole experience – the overwhelming support of every single person in my life. Family, close friends, old friends and new friends….and even complete strangers. Everyday they offered kind and encouraging words. So this is my advice for anyone going through this right now – even though having a premature or sick baby in nicu can become an extremely lonely and isolating, talk. Talk to anyone and everyone. Still try to see your friends and family outside of the hospital, chat to the nurses, go to any groups they have available and definitely talk to other parents on the unit. It doesn’t need to be lonely.
Emily – nown 6lb 2oz ❤❤❤