Telling Our Story

Last Friday I went completely out of my comfort zone. I met up with the MP for Derby North, Amanda Solloway, and with Kate Repton, the founder of Friends of the Baby Unit, to tell our story and try to explain why extended maternity leave from premmie mummies is so important.

Kate had set up the meeting to hopefully ask Amanda Solloway to raise this issue in parliament. We gave her the petition that Catriona Ogilvy of The Smallest Things set up and said that their are already 100,000 signatures and also that there is a London MP who is on board to raise the issue too. Kate told her story of how she set up the FOBU charity 40 years ago but explained that there was no Maternity Leave at all then so she had asked me to come along as someone who has had a recent experience and how it has affected my life and future plans.

And so I told my story. Jack’s story. I have typed it out for people and I’ve told people the exceptionally short version in passing when they ask his age. But I have never told it our loud. I explained that my pregnancy up until then was extremely normal with nausea and cravings and tiredness and kicks and scans and all tests had always been fine. Until THAT DAY. I explained how my midwife had sent me to hospital for monitoring after a slightly high BP result and protein urea. I teared up as I told how the doctors were only thinking about me and dismissed my concerns about having him so early. I explained that my condition deteriorated so in 18th November 2015 at 28 weeks and 6 days I had an emergency c-section and how I heard him make a couple of cooing noises before he was whisked away before I could even think straight.

I explained that he was in the NICU for a total of 89 days and had spent that time growing from 2 lb 6 to 7 lb 3, how he struggled to breastfeed so we ended up teaching him how to take a bottle, how he gradually and with only one major set back learned how to breathe. I also explained that he actually had to have home oxygen until he was 7.5 months so the NICU journey doesn’t just end when you leave. I struggled to explain how it feels to sit by a perspex box week after week, how it feels to wait for a nurse to tell you that its ok to touch and hold your own baby, how my baby’s first feed wasn’t snuggled up against me but trickled down a tube at half a millilitre at a time.

All of these reasons all together add up to why maternity leave should be extended for premmie mummies. I had intended to take 9 months because that’s how much you get that is paid but suddenly I had used up 3 of those precious months in the NICU barely being a parent at all. Once Jack had been home a couple of months I started to get major anxiety and panic that I’d be leaving him sooner than he was ready and sooner than I was ready. I couldn’t send him to a nursery with an oxygen cylinder and still delicate lungs to be with coldy, snuffly, not-covering-their-mouths-when-they-cough normal babies. I couldn’t leave him while I was still seeing two different psychologists to get past my anxiety and PTSD. So I have extended my maternity leave into the unpaid stage.

This is not ideal, I explained, but necessary to get Jack to a stage where he can be fairly normal and able to be left with my parents with no hassle and for me to heal enough.

Amanda was very much on board and has arranged for a letter to be drafted to be sent off so this issue can be discussed. We pondered over exactly what we are asking. We can’t expect every premmie parent to automatically be given extra pay from the birth date up to 40 weeks because that would completely snowball. We need to be specific about what we are asking for. The NICU consider that anything before 37 weeks to be premature but a baby born at 36 weeks, even though technically premature, will most likely go home within a few days and not need any nice time. I explained that generally, once you get to 34 weeks the baby wouldn’t really need any breathing assistance and is far along enough that the sucking/feeding reflex is kicking in so may only be in a couple of weeks. 32 weeks and below will mostly need breathing assistance, growing time and a feeding tube as well as an incubator as they can’t control their temp yet.

We decided the length of the NICU stay is the important part. How helpful would it be to have an extra few weeks of maternity pay, for example from 28+6 through to 37 weeks is reasonable, even though he didn’t come home until (I think) 41+3.

The meeting went so well, she is fully on board and has the petition info. I felt really good afterwards. This is something that is clearly not affecting me as my leave is already happening but if I can be part of helping others out then I am glad. Extended pay would mean those who have to travel a long way to the hospital daily wouldn’t need to worry about petrol or bus fare and wouldn’t need to worry about sending the older siblings to extra childcare.

I feel great about how I got dressed up smart and went to a proper meeting with an MP and told a very difficult and emotional story with dignity and that I got to show off Jack with pride. How far he has come! From that tiny little thing to now!

I was so fricking proud to tell the story of how strong and heroic he is. And I didn’t cry once. That’s progress for you. Suck it, anxiety and PTSD!

Beyond The NICU Facebook page

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