Saturday, 4 February 2012

Sometimes Grief - Adapting After Preterm Birth

I read this really interesting article yesterday posted on Facebook. It's title is New Moms May Grieve Preterm Birth, but Adapting Quickly is the Key. It's based on research conducted at the University of Michigan, which followed 74 babies born before 36 weeks gestation.

The main finding of this research is that mothers who have resolved their grief are three times more likely to have securely attached infants. The article does not go on to explain how they measured attachment, which I am curious about, or how they measured if grief was resolved.

I found it interesting that when sharing this on Facebook, one of my fellow premature mum friends commented that she was concerned this would put more pressures on mothers to overcome their experiences and "get over it", for fear of damaging the way in which their child is attached to them. I didn't see it that way, but I see her point now.

So where does that leave us? What the article suggests is that paediatricians work with mothers on resolving their grief, and this has to be taken in context of the US system which is so very different to the UK system. In the UK it is rare that you have a close relationship with a paediatrician, unless you child is quite ill, and many premature babies are not. So that recommendation, I would argue, is not going to work in the UK, unless babies are more closely followed up by paediatricians, which I don't think is practical, given the cost of such a measure.

I found it fascinating that there is no correlation between gestation or the wellness of the mother or infant and grief over premature birth, which confirms what I have said for a long time. What we have in common whether our baby was born at 24 or 34 weeks, is the unknown. No one can tell us how things will be. In our case our consultant wasn't very experienced with 27 weekers and put the fear of God into me that Joseph would never eat, would be in an out of hospital with Chronic Lung Disease and be a generally sicky and difficult baby with long term problems. For me, that was a huge source of grief feelings for me, that I'd failed to keep Joseph safe and he was facing an uncertain future.

 I remember feeling awful in NICU when comforting mums, I would go over and give a new mum a hug when they came into the unit. Often they would ask about gestation and weight, and then feel shocked and guilty that they felt so sad about their own situation when our own was so much "worse". I never saw it that way. No one wants their baby in NICU, not for 3 months, not for 3 hours. I saw it that our grief was the same. Our unit took mainly later gestation babies.

What I think we need to do, as compassionate parents as well as health professionals, is look at how we help mothers (and fathers) with grief. So much of aftercare is left to chance. The baby is well, is discharged, the mother and father are left to carry on. I felt completely on my own with Joseph, and very scared of what the future held. I felt robbed of normal experiences, and quite bitter as to what had happened to us. I also found that my Health Visitor had no interest in us. She said she had no experience of premature babies and she left us to our own devices. I really struggled. I was lucky to have a good GP and a fabulous Surestart centre but it was up to me to fill that gap in service provision. Not every mummy (or daddy) can do that.

I went through all the classic stages of grief as described by Elisabeth Kubler Ross.
Denial - Yes I've had an early baby, but it could have been worse we're fine now. There's nothing to be sad about.
Anger - I had this in bucketloads. I was angry that no one believed me I was ill, angry that my baby could have died. Angry with the whole situation. I was angry at my husband for going back to work, and being so sanctimonious about it all. For a long time I thought he should have taken sick leave and supported us emotionally.
Bargaining - This one was complex for me, but for a while I just wanted to have another baby, to make up for this pregnancy that I stuffed up, that if I could just have a term baby I could feel better about this one.
Depression - Whilst I didn't have classical depression, I was very sad. I felt so sad for the suffering I put Joseph through, for the things we had lost. I felt deep guilt that this was all my fault. And, in my case, this was coupled with Post Traumatic Stress Disorder so spent a lot of time being stressed and anxious too.
Acceptance- For me, this took about a year. I moved through those stages,not chronologically, and not necessarilly neatly, bouncing around the stages, at different times. Once Joseph turned one corrected I started to feel much better, and every time he met another milestone, I started feeling better.

I don't know, whether in terms of the research, this would be considered quick or not as its not covered in the report. I certainly feel Joseph has a strong and healthy attachment to me for the most part. I did have a lot of help from my Surestart Support Worker in the early days, and she worked hard with me to make sure I saw the reality of Joseph and to live in the moment.

I am wondering what we can do to help mothers, and fathers, with their grief. How we can help them get to the point of acceptance. Would more support, closer communities, talking through things with peers and or professionals help with moving through those stages? I think its very important we talk in terms of acceptance, as it is unreasonable for us to ever expect any one of us will "get over it".

I know in my case I was desperate for peer support, and several ladies on Bliss in particular really helped me, but I didn't have anyone I could have a cuppa and a cry with, who truly understood. It's one of the reasons I still blog, in the hope that I can be found, and I can be that virtual shoulder to cry on. I don't do this for money or recognition. The emails and comments and social media messages saying "thank you, I feel so much better for knowing my feelings are normal" is what I do it for.

If you have had a premature baby do you felt you went through grief? Did it resolve for you? What helped you? Would anything additional have helped?

15 comments:

  1. Fascinating Kylie! Also quite controversial, I can completely see where the research and idea is coming from, but also very much understand the perception of it being another "failing" if you don't get it right. I haven't yet read all the article so this might be waffle, but it would interesting like you say to see their methods of measuring attachment and grief; and if they were measured by a professional or by the parents. I would imagine that parents who still felt they were grieving would also see their relationships with their babies differently, as it can be very hard to hold a more rational, subjective viewpoint when in such a heightened emotional state, this wouldn't necessarily be their "true" feelings. Likewise when measuring their babies' attachment to them. I know from my own experience, it wasn't until someone helped manage my feelings that the 'fog cleared' so to speak and I was able to acknowledge that I was actually doing pretty well and my daughter did not have any misgivings towards me! I think that having to option to speak to an experienced counsellor is very important and also having the knowledge and information that many of the emotions are fairly uniform, whether by literature or speaking with other parents. I would have loved a booklet detailing other people's experiences when in NICU and also possibly the stages of grief and acceptance; the literature surrounding the medical side is fantastic, but the emotional wellbeing of the families can feel quite sidelined, and it would have been lovely to be able to put names to emotions and realise that others have got through it and you will too. Eek sorry I've written an essay!

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  2. Whilst this is an interesting concept, and I appreciate that the choice of words is not yours Kylie, I personally would be cautious of applying the term 'grief' to anything other than a bereavement. Whilst I understand that parents go through a similar process after a premature birth of a baby that survives, in my experience I don't think that it is quite the same as grief in the fullest and most usual sense of the word, the sorrow that is caused by somebody's death.

    I am saddened by the fact that my surviving daughter had a premature birth and I have struggled to come to terms with many of the things that happened to her and to me. But I would not say I went through 'grief' as I did when her twin died. Although the two sets of feelings are, inevitably, slightly tangled up in one another as they happened simultaneously, I do think that they are different and deserve to be differentiated from one another.

    I also would agree with the point raised by your facebook friend that the conclusion reached may not be particularly helpful for parents, who are going through a difficult enough time as it is, to hear that they need to hurry up and sort their emotions out or risk their opportunity to bond with their child. Particularly if you are in a similar situation to that in which I found myself and are grieving the death of one child (or more) from a multiple birth whilst attempting to bond with survivors. Whilst this may well be the case, that it is important to resolve the feelings of the parents, I think it needs to be communicated to those parents with sensitivity and compassion, perhaps medical staff simply being aware that such a sequence of emotions might be occurring (some of them don't seem to realise that you may even be upset by having a premature baby!)

    It seems that there is patchy aftercare for anybody who has had a less than typical experience of birth, be that a traumatic birth, a premature birth or the loss of the baby during or shortly after birth. I was very, very lucky to have the support that I did and I deeply wish it could be the same for every parent who would benefit. It makes me very sad to think of people feeling as you have described, 'completely on their own and scared,' especially when you consider what an amazing triumph it is for us to bring home little ones like your Joseph and my daughter.

    And I've joined mouse in writing an essay! Eeep! Got a bit carried away but the subject is one close to my heart.

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  3. I love essays!

    I'm in two minds about the word grief. I think there is a sense of grieving, the loss of the remainder of pregnancy and particularly grief similar to that of someone with a child with severe disabilities, the loss of normality, but I completely understand that it's not a good word. Grief over loss of a pregnancy that has ended in prematurity is very different to grief over a bereabement.

    I personally think that whilst we need a better word, the stages do exist and as you say I think we need to nurture these parents, particularly when they have had a bereavement. I know especially with multiples it is incredibly difficult, and I think in a lot of cases grieving for the baby who has died is put on hold as you fight for the surviving child/children, its incredibly complex, but rather than leaving it to chance, I think we do need much better care of parents.

    But that doesn't necessarily need to fall to the NHS, it can be Bliss grops, concerned parents, Surestart centres, specialist groups like TAMBA.

    Yes, once I managed to get my head around it, and find friends and get support, I got much better, but it was very hard to reach out to others, which I have never had a problem with before.

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  4. Just wanted to say that I agree with what your saying and just wanted to add that after having Daisy at 24 wks, we were offered bereavement counseling on the unit Im sure it was around when she was six weeks old and things were really bad. At first I was shocked by the name of the counseling but after the sessions i would say that dealing with the loss of your pregancy and having your baby seperated from you and the loss of the birth you have planned and should have had. I do agree with the term greif being used, and it should be addressed and parents should be helped through this process. We recieved this help and after bringing Daisy home was diagnised with post traumatic stress disorder, picked up on by my extremely good health visitor.

    The other thing I wanted to comment on was the point you raised about it doesnt matter what gestation your child is born at the level of stress is still the same. We had George 31wks just under a year after having daisy and we knew what to expect and when and what to worry about. We help out at the RVI in newcastle as a buddys talking to parents who have had similar babies to Daisy, I said I would rather not do later gestations, as George's birth was so positive in comparrison to Daisys but only because of what we had been through with Daisy and what we had learned along the way and I would hate to undermine a parent having a prem at a later gestation as no matter what the gestation having your baby born early is scary and heart breaking and something Im not sure if you ever get over (im only two years in).

    I hope what Ive written makes sense and wanted to say that your blog is fab!!! what an amazing thing for other parents and also your son to read when he is older.

    Layla

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  5. I just wanted to say thank you for writing this, it helps to know these feelings are normal especially when everyone around you thinks you should feel fine because everything's ok now. Im still fairly new to this as mason is 11weeks old now but thank you!

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  6. I haven't read the research yet but you raise some really interesting points Kylie. I've never considered using the word 'grief' before. I definitely spent the first 6 months in denial and even in the first couple of days I was strangely optimistic about the situation. My default mode is always 'just get on with it'. It wasn't until around 6 months later that I began to get my head around what had happened and did things like look at photos and put them in albums or read Isabella's hospital discharge notes or started to seek out other parents and talk about my experience. And when I did I too found there wasn't much out there in terms of support in the community - hence our lovely new group! I too wanted to help others but also looking to meet a bunch of people who'd had a similar experience. I have also felt bitter and sadness about not having a 'normal' experience - at the moment its every time I watch One Born Every Minute and see all the mums experiencing the 'normal' things I didn't! On the other hand, when I did start talking to other parents I also had the guilt you refer to and the feeling that my situation wasn't as bad as others as my baby was born at 31 weeks and is now healthy.

    Whether its 'grief' or not, you're absolutely right - we all had different experiences with our little ones but we are all connected by the feelings we experience, whatever the gestation etc. For me, meeting other parents over the last 6 months has definitely helped me accept that my feelings are valid and accept what happened.

    Not sure what I think of the research of itself or how useful it is... I don't think you can be fast tracked through the stages and feeling pressurised to do so because you might be doing more harm to your child could result in parents suppressing their feelings and cause more long term issues.

    Sarah

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  7. The article is worth a read, but I do think its useful in that too often the focus is on the baby and getting them well, as it should absolutely be, but the parents and their emotions aren't supported the way they perhaps should be. It's a difficult time. I was the same, during Joseph's hospital stay I was very positive and just got on with it, it was when we got home it hit me.

    I think you are right, that you can't "fast track" people, but if mums and dads are aware that this maybe something that is likely to happen, I think a higher self awareness, and an ability to ask for help, and knowing where to get it can help. I think that's where Bliss groups are so important, to sign post parents to appropriate services, and importantly, a cup of tea, a biscuit, a tissue and a huge hug, often that's all that is needed.

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  8. Thank you for your comments, absolutely makes sense but I would have beenn taken aback by "bereavement counselling" too. It's great you are helping out with other parents, and understandable that you don't feel you are in the position to help parents of babies of later gestation, and how wonderful you got such good care with George.

    I hope people do find my blog useful, I really enjoy it and it's really helped me! Poor Joseph will be embarrassed by some of it no doubt!

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  9. Thank you, and you've hit the nail on the head. I really think that people need to know what is normal and what isn't and also professionals too. Sometimes the grief we go through is mistaken for PND, and its different, it won't respond to medication. I think its important that people are signposted as to what to expect and given appropriate support. The new Tommy's Having a Premature Baby guide does that to a point, and hopefully that will help some parents.

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  10. Hi Layla,

    (Sorry Kylie to hijack this) What a coincidence-I am also signed up to the buddy group at the RVI in Newcastle. Maybe see you at one of the drop ins one day!

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  11. Diaryofapremmymum5 February 2012 at 00:17

    A very interesting post and topic. I think perhaps one of the most significant things that can make a difference in all this is the way family involvement is promoted in units .A mother who is allowed to care for her baby, participate in feeding and engage in kangaroo care is likely to bond well and create a secure attachment. We know that smaller gestation babies are allowed less kangaroo care/parental interaction but equally some units don't encourage and promote all of these concepts. This may explain some of the differences but a lot will be down to a mum's personal history. I would also be interested to see how they measured grief etc, they may have done a qualitative study and used thematic analysis- asking series of questions and look for commonalities that fit a particular criteria.

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  12. You are absolutely correct. In our unit we weren't allowed kangaroo care until Joseph was in HDU, some 4 and a bit weeks. Whereas in other units I know its encouraged even if the baby is on ventilation or CPAP. I found it hard at first seeing how other mums and babies on other units got so much more interaction. I do think what happens after discharge is important too, and it support parents is important. I think its significant just how much people reach out online, and wonder if that's partly because we're not getting it right out in the community.

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  13. Hi, yes we should be at the next one, were you at the one in Dec? would be lovely to say hi in "real life" xx

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  14. I think I was, was it the one with lush christmas pudding themed fairy cakes? If so, I was the dozy mare that came in late and stayed for about ten minutes dithering as I was on my work lunch-break therefore entirely not on this planet and quite wanting to have my baby with me. I'm trying to get the next one off as holiday so I can actually attend and with Alice, rather than counting paperclips in the office! Maybe see you soon!xx

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