Friday, 3 August 2012

Having a Special Care Baby - No Such Thing as an Easy Ride

It's no secret that I hate competitive parenting. Having a baby who was 3 months early meant that for his first couple of years, he came last in everything. Last to sleep through the night, to sit up, to crawl, to walk. I just retreated a bit, and hung out with the premmie crew, and tried not to worry too much.


It came to my surprise when I started reading and hearing comments from mums of premature babies on various online forums and in real life, almost doing the same, in terms of competitive parenting, but opposite. "How dare can someone who had a baby 6 weeks early be distressed, my journey was so much worse".

I have been visiting the Bliss Forums more often recently, as many of the regulars have moved on, and there's lots of new people who need support (hint hint - get back there mums!), and read a heartbreaking message from a mum of a 34 weeker who wrote:
I have had a fairly easy ride compared to most of you on here (and that’s were the guilty comes in)

I don't care at what gestation your baby was born. There is absolutely no such thing as "an easy ride" if you have had a premature baby.  If your baby was 24 weeks or 42 weeks, if you "did time" in special care, whether it be 6 months, 6 weeks, 6 days, or even just 6 hours, you are in "my gang". As much as my blog is called "Not Even A Bag of Sugar" it's not meant to be exclusive. You will notice I never really use the term "micropreemie", any premature baby, and their family, needs support. The act of having a baby who is not well, and is taken away, leaves scars. It's horrible. People "on the outside" often don't get the trauma. Ok your baby came early, and was in hospital, but he came home and was fine.

I can't underestimate the jealousy I feel when I see mums who have just delivered a baby holding them in the delivery room. I will never ever get that very "normal" experience. And neither will those who delivered their baby at later gestations, but poorly and in need of treatment. Like most of us who have had premature babies, I didn't get to see my baby, or touch him when he was born, and that still hurts me, three years on. I won't ever get over that. I don't dwell on it, but I won't ever be over it. I will never ever get that back.

I strongly believe that act of separation scars us. It isn't "normal". One moment our babies are inside, the next they are with strangers in a room far from us, they may as well be in Siberia, they are not with us. And that should unite us, not tear as apart. We shouldn't criticise those who are traumatised because their situation wasn't as "severe" as our own.

Empathy. It's a dying art I think, but surely we should be able to put ourselves in each other's shoes, even if they are not the same size as our own.









14 comments:

  1. A great point and very relevant.

    ReplyDelete
  2. Seriously? People say these things? I don't get it.

    Everyone's journey is different, even within a couple. Littlebit's Daddy's journey was a totally different experience to mine and we handled it in different ways.

    Everyone starts from a different place too, that can alter how they "cope" with their journey.

    I'll bet we all have one thing in common though. I'll bet we all wish we'd had a ticket for the Express Train like the other "normal" Mums.

    Why can't people just accept differences and embrace them? x

    ReplyDelete
  3. Hear hear. I remember saying something similar to someone once who was obviously struggling, yet was almost apologetic because her baby had "only" been in x amount of weeks in comparison to my xplus.

    It's the separation and the worry that scars. And yeah, even if baby's health is completely perfect ever after and you have overcome the psychological impact, those scars always remain.

    ReplyDelete
  4. This is something I find I'm talking about all the time to the parents of special care babies I meet.

    My little girl was born at 31 weeks and when I first started connecting with other prem mums I too felt guilty by comparison that she was 'only' 9 weeks early, that we 'only' had a 4 and a bit week stay in hospital and that she didn't have as many complications as others I met. Even in hospital when I read 'worse' stories in bliss publications etc I felt I should be grateful as I was lucky - which I know I was - but this doesn't mean my feelings were any less valid than those of the mums of 24 or 25 weekers.

    But the more people I spoke to the more I realised that it is the separation from your baby at this most critical time which everyone seems to struggle with most and which stays with us the longest.

    Since then I have come across a lot of mums of later gestation prems and full termers who were born with a low birth weight or were poorly, and so many of them feel a similar guilt or feel they shouldn't be needing support because they had it fairly easy by comparison and anyway 'their baby is fine now'.

    ReplyDelete
  5. I came via the bliss board. I do take your point, and that it isn't a competition. But having said that, I think what occasionally grates is when the person in question doesn't make even a nod to the experience of someone with an extremely early or extremely poorly prem baby. I've had friends talk to me about how simply terrible it was being separated from their baby for four hours after birth, or how their poor little baby had to have so many awwwful heel prick tests during their 12 hours on SCBU. My firstborn spent time on SCBU - I get that it's not a nice place and that it can be traumatic - but all the same it feels to me that there is some failure of empathy on their part to talk about an awful 4-hour separation to someone who was unable to hold their baby for a month, or about heel pricks to someone who saw their child go through 6 lumbar punctures and countless transfusions and antibiotics such that his veins tissued completely. Just like I wouldn't talk about my dead cat to someone who'd just lost their granny, there *are* different degrees of difficulty in the NICU/SCBU experience.

    ReplyDelete
  6. Thanks for reading. I do agree, empathy is a two way street, and people should acknowledge each other's feelings and experience, and I've blogged a lot about that in the past. But I do feel its a shame that someone feels they have to apologise for having a 34 weeker. It shouldn't be that way.

    ReplyDelete
  7. Great post as ever and totally.agree.also agree with tilly,I find it really hard when people moan about taking their children for immunisations and how awful to see in pain.I just ignore as of course its not nice but try watching them try to get lines in to get fluids and antibiotics in when all shot to pieces. Trying numerous times and doctors refusing to try! Thank goodness for a wonderful nurse who got a line in gemma's finger to use until could get a central line in...
    Sorry,bit of a rant on my way home from work x

    ReplyDelete
  8. *Stands and applauds*
    I remember the competitiveness well. The whole my baby's had more operations or more medication than yours. I stopped telling people both my girls were prem in the end because I didn't want to seem like I was trying to 1-up them.
    Sadly it's the same with disabled kids, my eldest has ASD and there seems to be some parents who want to have had a worse time getting a diagnosis, or getting help in school or simply have more things diagnosed as wrong with their kid. It's sad and frustrating. It makes it difficult to get good advice or support.

    Really good to see your post addressing this issue :)
    Jo x

    ReplyDelete
  9. *Stands and applauds*
    I remember the competitiveness well. The whole my baby's had more operations or more medication than yours. I stopped telling people both my girls were prem in the end because I didn't want to seem like I was trying to 1-up them.
    Sadly it's the same with disabled kids, my eldest has ASD and there seems to be some parents who want to have had a worse time getting a diagnosis, or getting help in school or simply have more things diagnosed as wrong with their kid. It's sad and frustrating. It makes it difficult to get good advice or support.

    Really good to see your post addressing this issue :)
    Jo x

    ReplyDelete
  10. Being a mother 34&35 week early babies I am humbled by your beautiful and kind hearted nature. Whilst my babies were in NICU I befriended 2 mums whose babies were born at 24 & 26 weeks. They were lovely and supportive, understanding that my distress at not feeling a few more weeks of kicks, not having a natural labour and being separated from my baby was not dissimilar to theirs. Yet I felt guilty (and thankful) that my babies were nowhere near as delicate or unwell and would leave whilst their wait continued. I hope I was comfort to them as they were to me!
    It is a similar experience but it's not the same, I was confident my baby would come home but they had no idea and could only live for each moment. I prayed every day they would still be there and luckily they were and now we chat at check-ups. So I would be inclined to say that my experience was not quite the same and would feel wrong comparing so would probably make similar comments as you mention. xx

    ReplyDelete
  11. Thank you so much for this. I came here via the Bliss forum post you mention. My baby girl was born on the day you wrote this, at 34 weeks. I'm now at home and she is in SCBU for at least another week, and my heart is aching so much. I feel terrible guilt for not carrying her to term, but also know that there are babies in there that are a lot sicker, so I should think her lucky she's 'only' 6 weeks early.
    Thank you for your post, and your support.

    ReplyDelete
  12. Brilliant topic. This is one of the most irritating type of competitive parenting issues there is.

    I run a Bliss support group and if any of my parents were to start comparing their stories in terms of how bad they were, I'd shut it down. I don't care if your little one was only in NNICU for a day or a week, you experienced the same fears as I did on my first day in the unit. When they took your LO away at birth and you didn't know whether they would live or die, it makes no difference how long your stay in NNICU was, that fear is traumatic. That there were smaller or sicker babies in the NNICU did not lessen that fear. Your stay may only have ended up being a week, or two or three, they were the longest weeks of your life and you had to play the same guessing game as the rest of us. You had to deal with the same day to day trips to the hospital before it became a more routine part of life, you had to put up with the same insensitive comments from people you thought more of. You had to get used to the smells, the noise, the feeling of sheer helplessness.


    Sure the "micro preemie" journey is different but it isn't necessarily harder. I'm a strong person who deals with everything in life with a matter of fact attitude. My 29 weeker had an easy ride of it, our 6 weeks was relatively easy compared to some. But I can only recognise that now, at the time it was a very difficult thing to deal with. Just as it would have been if she'd been earlier, smaller or sicker. Someone with a different personality would have found our 6 weeks almost unbearable.



    Our daughter has cerebral palsy, probably as a result of her prematurity. Hers is fairly mild, but she still has major problems. There are many other children out there with CP who are far more affected. Am I glad she isn't one of them? You bet your ass I am. Does that make our life any easier? Not a bit of it. Our struggles are hard. Just as other people's struggles are hard. No-one has a right to insist theirs are harder because they are not in the mind of the other person.

    ReplyDelete
  13. Thank you....my twins were born at 34 1/2 weeks and both were in the NICU for 16 days while I was on the other side of the hospital for problems I had. I wasn't able to visit them for 24 hours. A nurse brought me polaroids of them. I think it added to a bit of the postpartum I had for the first two weeks after they were home. Then my one little one showed signs of genetic issues (nothing to do with delivery) and I snapped out of my depression and became mama bear but definitely the separation of my twins from me and my not getting to hold them for days left a scar. Thank you for letting me join your gang.

    ReplyDelete
  14. If you need your ex-girlfriend or ex-boyfriend to come crawling back to you on their knees (no matter why you broke up) you must watch this video
    right away...

    (VIDEO) Win your ex back with TEXT messages?

    ReplyDelete