Wednesday, January 23, 2013

Dealing with Pregnancy loss... Miscarriage, stillbirth, neonatal death.

I'm writing this not to be morbid but to show that things do move forward, even when you can't ever move on. Even when you expect the world to end. When Olivia died I went online and tried to find others who had lost babies as a way to understand what was happening to me. What I learned most of all was that I wasn't going crazy, I was normal. So here I am bearing my soul today, it's painful but if one other parent finds this and realises that they're going to be ok, my job is done.

The good stuff

I have mentioned before that I have lovely memories of labour and delivery. It really was amazing. Adrenaline still takes over, your body knows it still has a job to do. It felt natural and normal somehow. It was too late for an epidural so I gave birth the old fashioned, pain-free way. It was lovely. I also have nice memories of spending time with her over the following days and the day of her ceremony was beautiful.  Being able to hold her, have our family and friends see her, my husband dressing her, I am so grateful for all those memories.

The worst times

I am going to list the worst things I remember, most are too painful to talk about, before I go on to the moving forward part. I do this because I know some of you will relate and also because people are afraid to talk about this stuff. For the most part I now feel differently about the things on this list.

*Confusion over feeling movement when I moved against the bump after the news and before delivery
*My husbands pain
*Having her in my tummy but knowing she wasn't alive
*Milk coming in - nature can be very, very cruel. Terrorising.
*Looking pregnant for a few days after delivery - people giving you that knowing smile but they were wrong.
*Instinct - my body telling me I should be looking after my baby, hearing phantom cries etc. I cleaned the house like mad the day after I have birth. My body was telling me to take care of her but I had no baby.
*Feeling like I killed her. I knew it, I didn't think it. She was perfect and my body killed her. I've always felt my body, mind and soul together make me who I am and each one affects the other. This lead me to blame myself. 
*Leaving the hospital with my pillow and a memory box instead of a baby like everyone else.
*Walking through the front door with said pillow and memory box instead of our baby
*Seeing her clothes in the press
*Empty arms
*Empty tummy
*Cancelling the order for the double stroller and the lady asking why. 
*Not looking pregnant any more a week after delivery, back in pre-pregnancy jeans; I had nothing to show for what I went through. No baby, not even a stretchmark or a section scar. That was difficult. 
*Seeing baby sisters together for the first few months
*Babies with dark hair for the first few weeks, as Eve is blonde and Olivia was dark
*Cremation. Can't say more.  
Empty arms, empty arms, empty arms.

Have do you go on?

I don't know. But you do. For me the first three weeks were a blur of horror. I screamed over and over again, I want my baby, I just want my baby - even thinking about the pain I was in has made the tears come. That was my darkest time. After 3 weeks the unbearable days became every second day. Then a few good days followed by one bad, back to a few good ones. After 8 weeks had passed I had an unbearable morning or afternoon or night but never all day. By 12 weeks I was having a bad hour here and there during the week. Now 6 months on I still cry, I still grieve but I mostly smile and I'm mostly happy.
Everyone is different. Let it happen whatever way it happens. My husband and I decided together before I gave birth that we would let the agony flow in, however unbearable it was we weren't going to hide from it or try brush it under the carpet. It was torture. We got through it.You go from surviving one minute at a time, to one hour, to one afternoon, to one day. The loss never goes away I hear, you never stop missing your baby, no other pregnancy or baby can replace what you have lost but you do move forward somehow and life does get better.

How do I cope?

* On bad nights I slept with her picture frame in my arms.
* I keep a journal. I don't write in it all the time, only when I need to. Every few months they say you can look back and see how far you've come. They recommend not reading it too close to the time you wrote it as it can drag you back.
* I wrote a list of every single positive thing that came from having and losing Olivia. Every detail. It was three pages long. I read this list any time I'm consumed by the bad memories.
* I spend time with her by doing things like going through her memory box, holding her bunny or blanket, looking at photos.
* Scrapbooking - I would never have thought of this if it weren't for the A Little Lifetime Foundation. My favourite way to spend time with her is to make her scrapbook. That being said, some days it's too hard. Other days I enjoy it. You have to go with the mood you're in that day.
* Accepting that life in bitter-sweet. Eve and my husband make me so happy. Despite the sadness I feel I am still happy. Every event we experience has a bitter-sweet edge. For example, Christmas was so fun watching Eve but I know in your heart that my other baby was supposed to have a place at the dinner table this Christmas.
* At the beginning I accepted what happened after reading about early onset severe pre-eclampsia. The science of what happened offered me comfort - my baby wasn't singled out. It's nature, it can be amazing and it can be cruel. This also helped me deal with the feeling that I was to blame. My body was sick and it let Olivia down but the reason it happened couldn't be helped. Nothing I could have done would have changed it.
* Knowing that had they delivered her when I was admitted to hospital and not waited she might not have lived long. The blood supply had been cutting off slowly for a number of weeks. It was not a sudden thing. Her growth was being restricted before my symptoms showed.
*Knowing that she has brought us all closer together.
*Trying to look for the good in every little thing. It's there.
*Seeing a counsellor to deal with grief. I can say things to her I can't say to my family.
*Mostly I cope by taking one day at a time.


I have been contacted my so many mothers and fathers who have lost babies.  I'm no expert but my only advice to anyone who has lost a baby is - Let it come. It's the only way to move through it. However horrible and unbearable it is, let it come.

Take care of yourselves,

Amy x

Sunday, January 13, 2013

Early Onset Pre-eclampsia - Don't wait!

Hi everyone,

I have never really talked about what happened to Olivia. I thought that if I could make one more person aware that writing about it might be of benefit. It also might do me some good to get if off my chest.

Olivia's official cause of death was Severe Early Onset Pre-Eclampsia. She had IUGR (Intra Uterine Growth Restriction) as a result of this. We declined a post-mortum having seen the state of the placenta and my symptoms, I already knew what the cause was.

The pre-eclampsia increased my blood pressure - although it was only to normal levels in hospital terms, for me it was very high. This affected blood flow to the baby. The blood vessels into the placenta grew thick and the blood wasn't reaching the placenta properly which caused certain spots on it to die.  This continued to happen until more of the surface area was covered until Olivia wasn't getting enough blood to survive. The scary part - besides the "normal" blood pressure was that I had a scan 3 days before she died and everything looked fine, they couldn't even find an obvious problem when the scanned me after her heart stopped.

My intent is not to scare monger but to highlight to pregnant women that you can't put you health in someone else's hands. I should have gone straight to hospital in Lanzarote as soon as my blood pressure climbed and protein showed in my urine. Since the origins of pre-eclampsia are thought to be in early pregnancy when the blood vessels and placenta are being formed it was unlikely that Olivia would have been ok had she been delivered at that stage. She had not grown since 28 weeks and I was 32 weeks.

I should point out that what happened to Olivia was extreme, not the norm. While it's common to have late onset pre-eclampsia on your first pregnancy, it's uncommon to have early onset pre-eclampsia on you second after the late episode.

Early Onset and Late Onset Pre-eclampsia have different rates of recurrences and morbidity. I wish I had have known that it was different from what I experienced on Eve. I would have run straight to a hospital. My understanding is that before 34 weeks is considered early onset and is much more serious.

The cause of pre-eclampsia in unknown but the symptoms can be obvious. I would urge you to see your doctor or midwife if you are concerned at all. Even a quick phone call will put your mind at ease. They will let you know if you need to come in. 

The symptoms: You may have only one of these or a combination. They show after 20 weeks.
  • Protein in the urine 
  • High Blood Pressure 140/90 (but mine was normal! If you normally have low bp talk to your doctor)
  • Sudden swelling of face, hands, legs etc
  • Sudden weight gain after 20 weeks
  • Blurred vision, visual disturbance
  • Severe headache that doesn't respond to paracetamol
  • Abdominal pain - upper right rib
 If you suspect anything please don't hesitate.The majority of babies are fine but that's because of careful monitoring and/or medical intervention. The website is excellent for information, research and advice.

My symptoms were swelling (hard to bend my knuckles, face was also puff, legs large), severe headache (like my brain was being crushed), protein in my urine (4 times the normal amount for pre-eclampsia) but normal blood pressure. Had my blood pressure been high they would have intervened. I usually have low blood pressure (98/54 average) so for me to reach 130's/80's was serious but it wasn't taken seriously because it was still within the safe parameters of pre-eclampsia. On that note, they need to change the definition of pre-eclampsia.

If I could give pregnant women one piece of advice having been through Olivia's death it would be to take your health into your own hands. Don't be passive like me, sitting there hoping you're not bothering the staff with your woes. Hoping they can see what's going on in your body. They can't. It's a bit of an Irish tradition to say 'Sure it'll be grand, don't worry', this was my downfall. I should have shouted it from the roof tops until someone listened. It's your life, it's your baby's life, don't wait.

With so much love,

Amy x

What to say when someone losses baby & What not to say!

I felt the need to blog about this having talked to many others who have lost babies who are consumed by things other have/haven't said to them. I should point out that I have not been hurt by things people I know have said because I understand the panic of not knowing what to say but for other parents this seems to be a real big issue.

I think this comes down to awareness. I don't think anyone means to be hurtful but sometimes it comes across this way. Most people don't know what to say - that's fine. Put your arms around them instead and tell them you're sorry for their loss. The combined gesture said everything to me. Sometimes someone just being near me did the trick. Just don't hide from them.

One of the most important things is to acknowledge their baby. They are parents now whether they have other children at home or not. No matter how much time has passed since you have seen that person acknowledge their loss and the existence of their baby the next time you see them in person. It's awful to say, but I remember every person in my life who I have bumped into since Olivia's death that hasn't said a word about her. No hug, no I'm sorry, no acknowledgement that my baby was on this earth. I know it's because they don't know what to say but it's very hurtful none the less. 

What not to say in passing: (this list is not exhaustive, just from my experience. I have had some of these thoughts myself but it's usually not ok for someone else to say them out loud).

*She's better off - you pretty much can't say anything worse
*She's in a better place - the only place a baby should be is with his/her parents
*At least she wasn't full term - makes no difference, after 24 weeks a baby can live outside the womb so it's no consolation. One woman said this to me and I wanted to plant her one.
*At least you have another child - no consolation for the loss of  your baby, each child is a different human being. 

I have been to a few baby bereavement group sessions in the past 6 months and what couples talk about every time is how upset they are at what someone said to them. There are leaflets available from A Little Lifetime Foundation for families and friends and also one for work colleagues, to show people the best way to respond to such a disaster. No one knows what to do in these situations.

The absolute worst thing you can do - is say nothing at all. Yet it happens too often.This is one I have been on the receiving end of quite a few times.

Have you had someone say something insensitive to you? How did you deal with it?