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 preeclampsia.org 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


8 comments:

  1. Amy, you are incredibly brave to share yours and Olivia's story with everyone. I think you must not feel you were not too blasee about anything, sadly these unfair and unjust things happen with our without medical intervention. Little Olivia is watching over now and thinking how proud she is of her Mommy x

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  2. Oh, Amy, I am so sorry. I lost my son William in the exact same way, except that my blood pressure was sky high. I started vomiting at night and did not go in until morning. You always wonder - if I had gone in would it have been different? When I first heard that you had lost your cherished daughter Olivia, my heart was heavy for you. Making the mental adjustment from joyful anticipation to shock and grief is only bearable because we aren't given a choice when it happens to us. I almost died along with William, and I asked the doctor if they could let me go and save him. It wasn't to be.

    We who have suffered so grievously from pre-eclampsia are never at ease until a pregnancy has gone to term and ended in a safe delivery - not not just for ourselves, either. I had a colleague whose ankles were massively swollen. Her nurse said she was to go in on Monday when she called on a Friday. I took one look at her and strongly, strongly suggested that she not wait. Her blood pressure had just surged, and, fortunately, they were able to save both mother and baby. Even nurses can be clueless when it comes to just how fast eclampsia can turn to a very bad outcome.

    Thank God for you using this forum to get out the word. When I lost my son, many were unable to say anything. I don't think anyone truly has a notion of how horrible a loss this is without experiencing it. I know I didn't when a colleague's daughter was stillborn and I thought, but did not say, that it was a mercy that they had not known their daughter. I remembered that when William was born and was so grateful that my mouth never uttered such horrible thoughts.

    People's reactions varied from horrible to incredibly loving. My sister-in-law told my parents that she did not want me around her newborn because she was worried that I might kidnap her. This made me feel that if someone who knew me a bit thought that, then I had better stay away from children altogether because God only knew what strangers might think. This caused me great pain. But this was not the whole story. My best friend told me that she was profoundly sorry for my loss. She used William's name. She said that from then on, we would share her son. And so we have to this day. I am tearful now, not because of the embarrassed silences or unkind remarks, but because I have a cherished son, not of my own blood but of my heart, who has loved and honoured me from that day to this. There were no words to compare with her action.

    I am so deeply sorry that Olivia was not with you for her first Christmas. I am so pained at the thought of your empty arms, and of the quiet nights that should have been sleepless. Your baby was your heart, the symbol of the love that you and your husband share. You are doing a loving things in keeping her memory alive by sharing these personal, painful experiences in the hope that your tragic loss many help other mothers to be more vocal and proactive should any of the not so well known signs of pre-eclamsia occur. As women, we are trained not to be a bother. But when our babies are concerned, we should be a bother and insist that our babies are more than worth it to us. I have not done what you have done and write about this situation. You are a truly remarkable woman and I send you my love and deepest condolences.

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  3. Thank you Amy for sharing your story about little Olivia. You are amazing, lots of love x

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  4. Thanks for sharing your story Amy and sorry for your loss! Hopefully this might help people who find themselves in the same position. You are very brave and it is so good that you are able to talk about it xx

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  5. Hi Amy; I have been checking your Youtube channel every now and again as I'm one of your subscribers (Mrs Bazzy); I've often wondered after you and your family as I was so sad to hear of your loss of Olivia.

    I am so happy to hear that you are pregnant again; although I can totally relate to your fears regarding your pregnancy and your pre-eclampsia.

    I have had Pre-Eclampsia now in both of my pregnancies and I know how scary it can be. I have also had multiple miscarriages it's such a hard thing to go through; you are so very brave. You are amazing to create a blog like this to create awareness. It's also a very loving tribute to your Olivia.

    I wish for you to have a very "managed" pregnancy this time around and hope the docs can keep the nasty Pre-eclampsia under control and you have your babe safe in arms.

    Hugs to you and your family in Ireland; from Sydney Australia; Love Kath (Mrs Bazzy)

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  6. Thank you so much for sharing your story, dear one. I just came back from a doctor's appointment with a high bp 146/76 and +1 protein in my urine at 23 weeks. I am praying that my tests come back okay, but your story has encouraged me to take this very seriously.
    Prayers of hope to you, Amy, and also to Carolyn, who posted about her William.

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  8. I developed severe pre eclampsia at 28 weeks, doctor almost sent me home, midwife saved my life by insisting on second opinion. Pre eclampsia can be deadly, so glad you are raising awareness

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