Guest post: 'Nothing can prepare you for the realities of prematurity'
Today marks World Prematurity Day. Here, Mrboosmum - whose son was born at 29 weeks - says it's impossible to prepare yourself for having a pre-term baby, but that the kindness of others can make it bearable
Posted on: Mon 17-Nov-14 10:54:56
(21 comments )
I still couldn't move my legs. The epidural they'd given me to perform a manual placenta removal because my body wasn't ready to deliver it would prevent me getting up for hours yet. But as I lay there in the half-light of a private ward, listening to healthy newborns crying across the corridor, my mind raced: if only I'd known. If only my body and mind had been prepared.
But you can't prepare for prematurity, I realise now.
Many mothers know they are at risk of premature delivery. Many are forced to spend days, weeks or months trying to carry a baby determined to enter the world before it should for as long as possible, to maximise their chances of surviving and thriving. I wasn't one of them. I was one of the lucky ones.
I was at work, 29 weeks pregnant and thinking about how far away the start of maternity leave felt. Thirty minutes later, I was in an ambulance being taken to a hospital I had never set foot in before to give birth to my second child.
That night, as I lay there trying to remember the face of a little boy I'd only glimpsed before they whisked him into the incubator, I felt I had to play catch up. I knew nothing about prematurity. Nothing. I frantically Googled “prematurity” and all its synonyms. As the hours passed, my search terms became more desperate: “prematurity”+“breastfeeding” soon became “pre-term birth”+“29 weeks”+”survival chances”. If only I had been prepared for this. If only I’d known it was coming, I kept thinking.
It wouldn't have made a difference, of course. You can find out a lot about prematurity very quickly these days - you can join forums, you can read blogs, you can even read research papers by neonatologists on your mobile phone. But nothing can prepare you for the reality. For the unnaturalness of being separated from your child minutes after birth. For being able to see through your baby's skin to the veins pulsing underneath. Nothing can ready you for having to touch your baby through holes in a plastic box strewn with long lines and wires amid the incessant beeping of alarms and monitors, as if you were disposing of the most beautiful bomb in history. Nothing can prepare you for that awful smell of sterility or the suffocating fear that your child might die.
Nothing can prepare you for the unnaturalness of being separated from your child minutes after birth. For being able to see through your baby's skin to the veins pulsing underneath.
Nothing can prepare you for an NICU stay (or even having to learn, quickly, what this, along with a host of other acronyms, means), where time ebbs and flows in a uniquely excruciating manner. Or for the waves of despair and hope we rode as we waited many weeks for our baby to come home.
And nothing can prepare anyone for the impossible logistics of special care life. For having to choose between your children because a neonatal unit doesn't have family-friendly visiting policies. For your partner having to go to work while your life is in tatters because they need to save up their precious paternity leave in case you get home. For the significant sums of money you have to find for petrol, parking and food to be near your child. And when your child, like our little boy, will live with the effects of prematurity forever, nothing can prepare you for your new normal afterwards.
No: you can't prepare for the unimaginable.
But others can support you and make the impossible bearable. Doctors and nurses can remember that their patient is your child. They can remember that the acronyms they use - IVH, PDA, CLD, PDA, NEC - might mean nothing to you, and that, when you do know what they mean, they can shatter your world. Units can help by remembering that you are a family and providing a literal and metaphorical space for you to be that: to express milk for them and to read stories to your child with their siblings present, for example. They can provide rooms where you and your family can stay for a night or two so that you are in the same building (or in my case, county) as your baby.
Friends and family can babysit siblings or send food (you don't eat well in the NICU, I can tell you). They can send cards or gifts. After experiencing the pain of premature birth, the hardest thing I faced was many friends and family members not saying congratulations or sending cards because they thought our boy might die. Not knowing what to say, they said nothing. I understood. But it hurt.
And all of us can donate time or money to charities like Bliss, which does so much to raise awareness of prematurity, by offering training to healthcare professionals and providing vital information and emotional support to many of the 60,000 families affected by pre-term labour every year in the UK.
I was not prepared for prematurity when it abruptly entered our lives over 2 years ago. But with the care and support of many, we made it home. Prematurity still marks our lives with its legacy of cerebral palsy for our little man. But make no mistake: we are lucky.
Because just as nothing can prepare you for prematurity, nor can anything prepare you for the intense joy and gratitude when your baby comes home. And our little boy continues to amaze us and his medical team daily by growing into a bright, happy and utterly gorgeous individual with the best laugh you have ever heard.
I had a couple of days to prepare, but even then no amount of research could prepare me for the emotional toll.
From the absolute highs - I don't remember being so excited at DS's first poo!
To the lows - when DD stopped breathing and turned grey in my arms.
You just can't imagine it, and the utter exhaustion is beyond anything I've ever experienced. DS barely slept for the first 6 months of his life, but I still had more energy then.
Marking World Premature Baby Awareness Day, one set of parents who experienced the birth of their daughter three-and-a-half months early have written a book about their journey, with profits to the charity Bliss, and an ambition to donate a copy to every neonatal ward and family room across the UK.
Please help their cause, and find out more about the girl who was famous before she was even due to be born...
Hi MurderOfMog The exhaustion is extraordinary, isn't it? And yet somehow you manage because you have no choice. We also had moments when Boo stopped breathing. Having to administer oxygen to him myself while a neonatal nurse got a mask as the one on the wall was faulty was one of the most awful moments of my life. Watching his SATs plummet took me to the brink of despair and then I bounced back when he did. I can't bear the sounds of SATS monitors to this day.
No, even once DD was off all the monitors the sound of the alarms would send my heart leaping into my throat
My son was born at 29 weeks last year. The whole package of preterm birth, NICU stay and return home was by far the most terrifying and stressful experience of my life (made worse by total social isolation at the time). We were very lucky in that he avoided any serious complications and has been in good health since, but I still find myself extraordinarily drained, both emotionally and physically speaking. It's often a bit hard to share with 'non-prem' parents, who often assume that we've 'put it behind us' by now. I also find that people often don't want to hear about his birth or NICU stay, while I still often want to talk about it. So thanks again for writing this - it's really helpful to share experiences.
Another 29-weeker here. I had no idea what was happening to me: I'd had a water infection for a few week, had finally finished work and the following Sunday she was born, weighing just over 2lb. My first memory is of waking up after the emergency cs wearing very little but something rather bloody stuffed between my legs. It was so sudden I didn't even have a spare pair of undercrackers.
I didn't get to see her for a while because I was still attached to various bits of equipment, but the hospital very thoughtfully gave me a private room so that I couldn't hear other babies crying. All ended well, thankfully, and dd has developed into a bright, relentlessly active and rather grungy-looking pre-teen.
Like others on here, I still can't hear one of those bloody SAT machines without my heart skipping a beat.
I feel so incredibly lucky. It could have been so different. And no, I do not "grieve over" the missed opportunity to give birth "properly" as some seem to do.
No spare undercrackers here either ;-) I gave birth (it was a precipitate labour as well as preterm) wearing interview clothes and jewellery in a posh maternity dress I'd borrowed from a friend because I didn't have one and had to look smart. Needless to say she didn't want it back afterwards.
I'm so glad you daughter has done so well. I don't grieve over a full-term birth (I'd had an emergency section with his big sister) either. But I do sometimes wish he didn't have to live with the effects of his prematurity for life even if I wouldn't change a hair on his head. I know that makes no sense.
Thanks so much for commenting.
At least there seems to be more information about now. I didn't have a clue about anything: only that, as time passed, the likelihood of survival ( which started out at about 95 percent, I think) became higher.
One thing I (secretly) am bothered by is that I was somehow responsible for the prematurity myself. I wasn't looking after myself (I wasn't able to-I was working a 65 hour week at the time and exhausted).
Another thing I vividly remember is Gordon Brown"s liitle dd being born prem and not making it. So sad.
Bugger -you didn't make it happen . It's not your fault . Lots of women " don't look aftre themselves " during pregnancy , through no choice of their own, and their babies are born at term .
Please don't blame yourself . What happened wasn't fair, but you didn't cause it
oh my today has stirred so many memories. Great post OP.
I knew my second was going to be early. But it was still so hard both mentally and physically.
Never having held my babies post birth instead just laying there as they are whisked out of the room is so difficult and throw into the mix unsympathetic midwives and it is hell. What i wouldn't give to have held my babies all wet and warm post birth instead of in a communal unit with wires and tubes. Also the having to wait and ask for cuddles. The whole thing is so unnatural and cruel.
The "long line" terrified me. I couldn't stay in the room whenever the other tube, the feeding tube had to be reinserted. Baby was too small even for the special prem baby clothe bought online so i tried to use dryer to shrink them . Pumping milk endlessly , the first few time only getting a few drops. All the dazed new moms pumping along with me. Saying goodbye every evening before i left to be with other kid. I don't think I will ever forget the 8 weeks my dd was first in NICU, then SCBU
No, I didn't get to have skin to skin contact after birth
No, I didn't have DS in a cot beside me in the
loud, filled with screaming babies postnatal ward
No, I didn't bond with DS immediately - I wasn't really ready to call anyone "my son"
Yes, I do think I should have taken things easier when I was pregnant
Yes, I donate to Tommy's because I'm very aware how lucky we are that DS is genuinely fine
Thanks for all the questions everyone over the last 8 years - thanks for the blog Mrboosmum
I do sometimes wish he didn't have to live with the effects of his prematurity for life even if I wouldn't change a hair on his head.
That does make sense. I think in a similar way about my baby and his disability. Your post is very moving. Good luck to you and your family.
Of course you don't cause it yourself, no matter how hard you were working during pregnancy!
Two of my three children were prem, a 32 weaker, but he had no prep, placenta previa and I haemorrhaged, and then my youngest at 28 weeks, waters had broken, and I tested positive for Hvb.
I was certain my first prem would die, and know now that that was very very unlikely to happen, but still, it didn't feel like that. He had a lot of trouble breathing, despite being 32 weeks, and was ventilated for 10 days then on oxygen but luckily came home without. I still can't bear the sound of the sat monitors. He is now 8 and bright and lovely.
Second prem, well, I didn't think lightening could strike twice! She was so tiny, but such a fighter. She was in hospital for ages, the usual crashes and infections, came home under 5lb. People stopped me in the street to tell me I had a small baby, surely meaning well but wtf.
A very dear friend of mine, who happens to be a nurse, when our first prem was born and everyone else was saying oh my god how awful, had the foresight to say how wonderful, how wonderful this happened to you in the 21st century, in the uk, in a great hospital. How wonderful you're both alive, and he was right, and his different stance really helped.
I made some great friends in hospital. If you've pumped milk next to another woman I guess you can talk about most things. I am grateful for this too.
Bliss is a great charity, doing proper campaigning on prem issues: school start date, maternity leave for parents of prems, hospital parking, nursing ratios, equality of treatment between health authorities. And this is all so important because although having a prem can be, was for me, an overwhelming experience, the parents get over it and get on with their lives. But good care and support really matters because it's the baby's life chances which can be determined by those first few weeks.
Such moving stories... It does bring back memories...
My DD was born at 33 weeks at high speed in a spontaneous labour. We had no idea whatsoever that this could happen. I think I was in shock. DH really thought our baby would die. Our first low point was when she was intubated about 24 hours after birth... I hated the expressing and really struggled with it. (Will be happy if i never see another breast pump!) We did eventually get breast feeding established though, with ebm tube feed top ups. When we came home she wouldn't gain any weight and dropped below the 0.4th percentile... I was devastated. But we got through it and she is now a ridiculously healthy 3 year old and is on the 91st centile for weight!
Throughout my second pregnancy we were worried about the same thing happening even earlier. DS waited until 36 weeks (phew!) though I was surprised how much he struggled with feeding. (He was to small, weak and jaundiced to feed for himself.) No NICU stay required though. Now he's a chunky 10 month old, also on the 91st centile for weight.
I still find it cathartic to talk about my experiences, especially DD's birth...
Lots of moving posts here.
We were expecting twins, with some amniotic fluid discrepancies in the pregnancy, so we knew pre-term was a possibility, but not really prepared for the HUGE spectrum of experiences that can mean.
We were lucky, in that we got to visit NICU briefly, ironically just before my consultant signed me off saying "I don't expect to see you in here for another 8 weeks or so". I only managed another 3 days, and had a PROM and super-rabid delivery at 30 weeks.
A definte sense of missing a 'normal' delivery here. With twins, our family is complete and, given how shaky things got for both me and the DTS I don't think we'd risk another labour anyhow. But I was under GA and my DH was abroad, so we feel we have a family without ever having had a birth, which is very odd.
It also has a huge impact on your parenting experience once you're discharged - I delivered so early I missed all the antenatal groups, didn't dare take them to many winter baby groups because they were so susceptible to infections, it's very isolating.
A distant friend had a 32 weeker, over 5lbs, no issues, home in a couple of weeks. We were in for nearly 2 months, ventilated, transfers to different hospitals, feeding problems, months of reflux, still on follow-up care for some points, and I feel like we had a really easy ride of it compared to many mums on here.
4 weeks ago today I gave birth very unexpectedly to our son at 27 weeks. Despite the amazing care we received he passed away in our arms 8 days later. We are heartbroken some days, numb on others. Nothing can ever prepare you for this.
I have tears running down my face reading all your posts. Cakebaker - my heart goes out to you and your partner.
I was first admitted to hospital at 26 weeks and was not allowed out until after DD birth. I spent 7 more weeks more or less confined to a maternity room, stressed out, trying to keep my baby safe for as long as possible. I felt helpless. Relieved in a way as well when she finally was born at 33 weeks. She was very small, and a little fighter. We were lucky, as we both received excellent care. She is 3.5 now and well.
Friends and family were supportive but they failed to appreciate how hard it was for my DP. He carried on working, visited me every other day (which was a good 45min to one hour drive), had to look after himself and was sick with worry for me and our unborn baby. I think he suffered through this period of our lives more than I did and I do not believe he was getting the support he needed. I was trying to protect him from the worst if my own stress and emotional turmoil but I found it too hard to provide him with the support he needed. I don't think he had anybody he could talk to.
How did your DPs felt? Did they get support too?
@Buggerthebotox: KristinaM is right. Totally right. But I hear you, too. I feel incredible, irrational guilt over my son's premature birth. I know it's not my fault but cannot help feel responsible for his prematurity and the disabilities that have come with it. A year and a half after I started blogging I realise I that I write in large part to work through this misplaced sense of guilt.\
Kinda late on the uptake but who really cares, everyone should be made more aware more than once a year.
This is my second time around in NICU, first with 31 weeker twins and now my 26 weeks DS. And nothing ever prepared me for the first time, and the 2nd time? I believe knowledge is power but sometimes I wish I still had some of that ignorance and naivety because it's not any easier.
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