Grieving and Coping After Premature Birth

GRIEVING AND COPING AFTER THE PREMATURE BIRTH OF YOUR BABY

For many preemie parents, it is shocking to them how deeply distressed they are by the early birth of their baby or babies. Feelings of sadness, regret, anger, powerlessness, guilt and anxiety can feel overwhelmingly intense. As a result, many parents worry that there is something wrong with them-- particularly if thir child survives, and particularly if their child's health and development is fairly good. When you have so much to be thankful for, why do you feel so bad? Ironically, the better a child does, the more the parents may worry about their inability to cope with the "prematurity thing". 

To read more please head to Preemie-l

Hospital Notes

I finally got around to getting both my boys notes, I have had a read through them and will try to update the boys pregnancy, labour, birth and NICU journeys over the next few weeks. It's nice to finally put in some of the 'missing' information about what happened.

Some things were worse than I remember, or maybe I didn't realise how bad they were at the time? The notes were quite confronting, especially Brendan's.

It was quite easy to get the notes, I rang the hospital and they told me to write a letter and attach some proof of ID with it and they would send them out. It only took about 2-3 weeks to come through too.

Grieving

The most difficult part of the journey of prematurity is leaving your baby behind at the hospital after you've been discharged, a baby that should be still tucked away inside. That's when a parents, especially the mother's, grieving process begins. You grieve the loss of pregnancy, a pregnancy that has ended too soon. You grieve the loss of feeling tiny kicks and rolls and you grieve for the loss of a normal pregnancy, a normal birth and a normal baby. I really hate the use of 'normal', but having a premmie is far from normal, far from the ultimate goal of a full-term birth.Yes, I am well aware that even full-term babies can have complications, that some mother's have had to fight very hard to get that full-term baby and that their pregnancies may not have been a textbook one. With prematurity you are guaranteed some kind of complication with the pregnancy, birth and/or baby. I mean otherwise the baby wouldn't have been born prematurely right?

On Thursday (21/04/2011) I became an Aunty. My sister-in-law gave birth to a beautiful baby boy, he was born a few days before his due date and everything went fairly smoothly. She had the perfect pregnancy, labour and perfect baby. There was just a minor hiccup with birth, bub required some help to get out and she required some stitches due to tearing. It really hit home just how far from normal my pregnancies, labours and births were. I know you shouldn't compare them, as everyone is different, every pregnancy, every labour, every birth and every baby is different. But it has been a difficult time for me as I try to process what I have lost, what I should have got but didn't. I look at my beautiful boys and I see how far they've come and they make me so damn proud, but then I see them struggle with something. Brendan with his speech/language or Tristan with his lungs (probably asthma) and it just reminds me just how hard we've had to fight to get to where we are.

I am grieving, I am grieving the loss of pregnancy, the loss of birth and the loss of those precious moments after birth. Brendan wasn't placed on my chest, his cord was cut and he was taken away and I watched as a team resuscitated him, I watched them count compressions on his tiny chest, I watched as they shoved needles in his tiny little body, I listened to the room as it felt like there was nothing else going on except the counting. The counting of compressions as they try to keep his little heart going. I watched as they shoved a tube down his little throat and I watched as he struggled to hang on. You see Brendan was born very sick, he had caught an infection from me (chorioamnioitis) which was compromising his little body even more than the fact he was 10 weeks early. His APAGR at 1min was 2 at 5min it was 4 and at 10min is was 5. I know how lucky we are, I know he shouldn't be here and for that I am grateful, but it doesn't help the pain.

Tristan's birth was a little healing for me, but still far from normal. Tristan was placed on my chest, but it wasn't for very long as he struggled to take his first breaths. He was taken away and again I watched as my child had needles and a tube shoved down his throat. Tristan did let out a little cry while they were intubating him, it was the most beautiful moment. Brendan was about 3 weeks old when he first cried. Tristan stayed in the room for about 45mins before they took him down to NICU. He was far more stable than Brendan was, he was taken away after 15min and was very unstable.

They say it takes time to heal, but I'm not sure that there is enough time to ever heal from such traumatic experiences. Maybe with time I won't think about it as much, maybe it won't upset me as much at least I hope so anyway.

Prematurity doesn't stop at the hospital doors.

One of my biggest pet peeves is when people tell me that everything must be 'ok' now, because the boys aren't in hospital, and just like their full-term counterparts. I'm not sure why people think this, probably because they don't live it. The affects of prematurity do not end just because you've been discharged. The affects can continue for many years. Yes we have passed the biggest hurdle, we came home with our babies which unfortunately, for many families doesn't always happen =( .Yes I guess my boys are ok, they are doing very well, but it's not because they've been discharged it's from all the long hours and hard work we've put in through numerous therapies and specialists. That's why they are doing well, but they still have their issues.

They say most premmies have caught up (development wise) to their peers by the time they reach two. Brendan is now four and is still developmentally delayed. Tristan is almost two (in two months!) and although he has some mild delays I still consider him to be caught up to his peers, actually we have never corrected his age.

Some might disagree with me, but I fully believe that ALL of Brendan's issues are a direct result from the pregnancy complications, his birth and prematurity combined. I believe the combination of placental problems, PPROM (premature pre-labour rupture of membranes), lack of oxygen, the infections, the brain bleed and the fact he was born 10 weeks early have all contributed to his Autism, Sensory Processing Disorder, Developmental Delays and his ear health and hearing issues. Of course much more happened, but those are the major ones.

Four Years On.... It's Not getting Any Easier.

Brendan turns four next month and the lead-up to his early arrival has not gotten any easier to deal with. Last night I was looking through some of the 365 photos and one lady, a midwife, had posted a picture of a resuscitaire (a table used in delivery rooms to resus newborns) and it was the same one Brendan had been resus'd on, exactly the same one. It affected me so much that I couldn't sleep last night. It took me hours to get to sleep and I didn't sleep at all very well.

This year I am going to try and break the cycle. I am annoyed with myself that I can't get through a single day without my eyes filling with tears. I know that what happened in that room was not my fault, I know the lead-up to his arrival was not my fault, however I also know that is was my body that failed him... the very person who is supposed to protect him let him down at the most crucial moment. If his own mother cannot protect him when he is at his most vulnerable stage then what hope does he have?

I always wanted to be a mum and I think I am a good mum, most of the time, but hey at least I'm trying. No-one gave me a manual on how to bring up a child who has needed extra care from before he was even born. Even now no-one has been able to give me guidance on how to cope with the curve balls that are being thrown our way. Sure I know we have it pretty easy considering what could have happened... Brendan was supposed to be a miscarriage... at 16 weeks I was admitted to hospital in severe pain and haemorrhaging pretty severely (forget pads, I was soaking towels) they couldn't find the heartbeat and bluntly told me I was miscarriaging, I discharged myself the next day because I believed had I stayed there that I was agreeing with them and I was losing my baby... I was not going to comply! The earliest they could arrange an ultrasound was one whole week later... back then I thought that week was hard, boy how wrong was I.... the ultrasound showed one very healthy heartbeat and that I was bleeding from between the placenta and uterus wall (not good news, but still hopeful news). For a further 7 weeks I was having weekly/fortnightly appointments between OB's and ultrasounds when finally the bleeding eased off and pretty much stopped. I saw the OB at 27 weeks who concluded that I would probably have another bleed before the pregnancy was over and that it shouldn't be too much more, to not be alarmed. At 27+6 weeks I had my GTT, who knows why they sent me for the 3 hour one.... I was in the low-risk category! But that's what they did... I suffered terrible morning sickness throughout the entire pregnancy, vomiting several times a day bringing up each meal (not sure how I survived...) then they made me fast for this stupid test which only made me feel more ill. The lady doing the test told me if I vomited up the fluid I would have to drink another... oh great thanks a lot!

I never got the results from the GTT, 34 hours after I commenced the GTT my waters broke. I still remember how calm and collected I was, I had gone to the toilet and done my business, upon standing up and taking a few steps I leaked.... nothing unusual (or so I thought) I had been leaking for a few weeks, just put it down to not emptying my bladder properly. I went back to the toilet to change my knickers (and to finish emptying my bladder) yet nothing else came out, (oh well still nothing unusual) I stand up and walk a few steps and it happens again.... now I start to get annoyed, what it going on?! I repeat the process, new knickers, go to toilet and I feel a teeny bit of pressure and then a large *splash* of clear liquid (hmm that's not wee!) still I change my knickers placing in a pad and I head back out to where my mum and my grandparents are (6.30pm). My grandparents were just about to leave so I pack up the coffee cups and then see them out the door. My mum comes back in about 5-10 mins later and I tell her what had happened in the toilet and how strange it was, because I was only 28 weeks I wasn't expecting anything. My birthing classes were booked to start when I was 31 weeks (and run for 5 weeks) so I had absolutely no idea what had happened.

My mum started freaking out a bit, she told me it was my waters breaking to which I replied that it couldn't be because of how early I was. She convinced me that we had better head into the hospital to be checked on anyway because it was something out of the ordinary. We rang the hospital I was booked into and the lady on the other end freaked out as well, she was rushing about with her voice and you could really pick the panic, she told us that they wouldn't be able to see me there because I was too early and that I only had the choice of one hospital and to get there ASAP. Suppose I better pack a few things, by this time it was 6:45pm, I threw in a bag that I had been living out of at mums house (luckily I was staying with her while I had appointments as my house was another 4.5 hours away!). 7pm and we are 10mins up the road when the phone rings, it's the lady from the hospital I am booked into and she is panicky "you aren't in any pain are you?" "no" "if you start having pains come straight here and we will put you in an ambulance to KEMH" "ok" *hangs up* Hmmm maybe this is really serious? Ambulance, only one hospital in the state that will take me now??

On the trip down I was getting excited, maybe I was going to meet my baby soon? How cool is this! I'm going to meet my baby. I knew nothing of premature babies and obviously not a whole lot about pregnancy either :lol:

We arrive at KEMH at approx 8:15pm and mum and I walk into emergency, mum speaks to the lady at the desk and says only a few words "SDH were transferring us, waters broken 28 weeks". Doors fly open, one lady brings a wheelchair another is carrying files, I'm made to sit in the chair and we are taken up stairs for monitoring. That's the moment I start to think, crap this is serious.

We arrive at MFAU and are taken straight in, past a few women in the waiting area, they already had a bed for me. I'm hooked up to a few machines and a nurse comes in and takes my BP while another one does a doppler check on bub. An OB comes in soon after and tells me he needs to 'take a look' (well there goes all my dignity!) he explained that he won't be doing an internal because of the risk of infection and the fact I'm not contracting means they have a good chance to keep bub in longer. He takes a few swabs and orders an IV drip and a needle.... some antibiotics, magnesium, nefedapine (sp?) and steroids.

Sometime around 10pm a neonatologist comes in and explains the chances of survival and the complications which may occur if my baby was born tonight. This was not happening, I'm supposed to give birth and hold my baby and we are supposed to breastfeed and then go home together, what this Dr was telling me was far from that. My baby had 80% chance of survival, 1 in 5 babies die... that's all I could focus on... my baby is dead, I'm never going to get a cuddle, it's going to be taken away from me and put in a plastic box where I have to ask permission to even open the little door on the side and if it does survive it's going to have a severe disability and not have a good quality of life.

I now understand that they have to tell you these things, but at the time it makes it so hard to focus on the positives. At about 1am I am finally taken up to the ward and to my room without my mum. My mum gets let out of the hospital and sleeps in her car (a 2-door hyundai getz of all things) (To Be Continued... at a later point)

This morning I rang the hospital to request my birth notes, Brendan's NICU/SCN notes and Tristan's NICU/SCN notes. I want to know why things happened the way they did and I want to be more at peace with what happened. I couldn't get through today, but I will keep trying. This year I am going to get help, this year I have had enough of sleepless nights and crying over a birth that went wrong; a baby born so sick which I feel could have been prevented. This is the year that I become stronger and face my emotions head on, because I can do this, I have to do this, if not for me then the two precious little people who call me mum.

Thanks for reading x