This week we welcome a guest blog on a very sad subject. Some of you may have suffered from the tragedy of a child being either still-born or not making full-term, or know other friends or family members who have suffered. None of us who have had luckier healthy births can ever imagine how much such a tragedy is likely to affect one and how you can hope to even deal with such a thing.
One reader has offered to share her story with us in the hope of helping others out there who may have suffered in similar circumstances.
A big thank you to Sadie van der Kraaij for sharing her personal story with us.
Miscarriage… It is one of the most desperate and helpless situations that a woman can find herself in. It doesn’t matter how much of the right food you eat, how much you put your feet up and take it easy or how many times you rub your growing tummy, you have the power to change absolutely nothing! That’s the bit I hate. I am a self-confessed control freak and the fact that medical professionals can’t tell you what’s going wrong, the fact they can’t offer you a cure, the fact you have to play this wait and see game, serves to only make a horrendous situation even worse.
I have suffered two miscarriages, not consecutive; thankfully I welcomed an amazing and healthy baby boy into the world in between them. If it were not for him, I don’t think I would have been able to reflect on the topic of miscarriage and write this account. The fact of the matter is, my two miscarriages were entirely different, just as any woman’s experience of miscarriage is entirely different. However, on both occasions I was startled by two things:
- Miscarriage is so taboo. 1 in 5 women will suffer a miscarriage and by that statistic I should know numerous friends and colleagues who have been through the same pain, yet I don’t. No one talks about it. Is it because the topic is so painful? Embarrassing? Or is it that women still feel a sense that they are being judged?
- The standard of medical care I have received, in certain areas, on both occasions was appalling and it is perhaps with a more analytical hat on, second time round, that I have been able to stand up and say ‘this is not good enough!’ My initial response was to write to my District Health Board (DHB), their reply was apologetic, but didn’t leave me confident that any change would really happen.
So, where do you go from here? I have been asked to write my account of miscarriage and of my experiences and maybe, just maybe this might be the start of something…
My first miscarriage happened in 2010 at 7 weeks pregnant. I had no idea that being pregnant and staying pregnant was so difficult. I had seen my GP at about 5 weeks, been given the iodine and folic acid tablets, was given a list of local midwives and was sent for a dating scan. No one told me that before the scan you need to have a full bladder, so when I arrived there with an empty bladder they weren’t able to do a normal ultra sound; they had to do an internal one. Baby was detected easily and heart beat was going strong. Whilst it was only a little dot on the screen, it was an amazing sight to see the little heartbeat. I returned from this scan and started to bleed almost immediately. Initially it was just spotting of brown blood and I felt it was just a reaction to the internal scan, but over the next few hours it got heavier. It was now evening, so my husband drove us to the local White Cross medical centre. There was little they could do there, but they booked me in for a further scan on the Monday morning. Bleeding and cramping increased throughout the weekend and we gradually began to prepare ourselves for the impending loss. Monday morning arrived and we went along for the scan. To our absolute amazement baby was there, was still alive and the Radiologist noted that baby had grown significantly over the weekend. We were on cloud nine! I couldn’t believe that even with all this bleeding, everything was going to be OK. I miscarried just 2 hours after this appointment. What do you take from this? We thought everything was going to be OK?
The aftermath of miscarriage is the ‘added salt to the wounds’. It’s painful; mentally and physically. Any woman who has experienced a miscarriage will tell you, it is NOT just like a heavy period. Miscarriage is lonely. I have an amazing husband and an incredibly supportive family, albeit in the UK, but I still felt alone in my grief, I felt like a failure. Miscarriage also disrupts your life, yet unlike an illness it’s invisible and misunderstood. You are not able to just go back to work and carry on with life as normal. You bleed for long time afterwards and you cramp for long time afterwards and your energy levels are really low. Then there are the comments. Some people understand and they realise that you are grieving. You are grieving for the lost baby and for the lost hopes and dreams. Others are less sympathetic and sadly, in some cases, it can even become extra fodder for gossip. Then there’s the burning question in your head that eats away at you at night and makes you feel sick to the stomach. What if I can’t have kids?
So what did I take from this? Medical professionals know very little about miscarriage. At the point you start spotting or bleeding you are at risk of a miscarriage. You will hear stories of women who bleed throughout their pregnancy and go on to have a healthy baby. You will hear stories that as long as the blood is brown and ‘old blood’ it is nothing to worry about. If a woman that can get through the petrifying discovery of bleeding during pregnancy with a positive outcome, then that is fantastic, phew! The bottom line is most bleeding will not be a happy ending. Don’t expect that medical professionals can tell what is going wrong. Answers would maybe help a couple to come to terms with what is happening, but you aren’t going to get them. It is usually down to an issue with the genetics, but they can’t be and won’t be specific.
Furthermore between the time of presenting yourself at your GP and when you are likely to have your first meeting with your LMC (@ approximately 10 weeks) you are in a limbo of care. I went to my GP and was told I needed to see my LMC. She hadn’t officially signed me onto her books, so told me I had to see my GP. “Guys, I have just miscarried and I just need someone to help me right now!” I was made to feel like an inconvenience, like I wasn’t a real medical emergency and I was wasting their time and that is unforgiveable! This is a grey area of care in New Zealand that I believe needs to be made black and white. From my understanding, most miscarriages occur between 6 and 8 weeks of pregnancy. Yet this is the exact time you are in this limbo of care. This was my first bullet point to the DHB! Furthermore (bullet point number 2) you need to have that ‘go to’ person who oversees the entirety of the miscarriage. I miscarried at home, informed the GP, yet no one followed up on my well-being. There can be so many complications after a miscarriage and this follow-up is an absolute must!
Miscarriage number two, happened just a few weeks ago. This miscarriage was a ‘missed’ miscarriage and was only identified at the routine 12 weeks scan, when we, devastatingly, discovered baby was no longer alive. Wow! That’s quite some news to take onboard. You would think that Radiologists would be given special training with how to deal with this incredibly sensitive situation wouldn’t you? I know enough about miscarriage to know that the Radiologist cannot tell me what has gone wrong. But I asked her to simply explain to me what she could see on the screen. She wasn’t prepared to do this and didn’t have time to go into this detail. So, bullet point number 3 to the DHB, if you are delivering bad news to a couple at a scan, please be prepared to answer what questions you can, it can actually help them come to terms with the situation. It took me a further 6 days to speak with someone who could answer those questions and could do so from the scan photographs, so it clearly could have been done at the time! As I left the radiology appointment, no one had thought to inform the receptionist that I had received bad news and she called me back to give me the CD of the photographs. Common sense people!
I felt slight relief, this time, that at least I was signed on with an LMC and therefore someone would be overseeing my care. However, a ‘missed’ miscarriage is, not a medical emergency and I had to wait a further 5 days until I could be seen at the hospital. That is 5 days of trying to live some sort of normal life, with a small bump that you know is your dead baby! During the 5 days, I did start bleeding and I did start cramping, this got progressively worse. The day of the hospital appointment arrived and I presented myself there in a great deal of pain and bleeding heavily. The Doctor I saw handed me three leaflets regarding my options. 1) Do nothing and miscarry naturally and at home. 2) Take a tablet that induces contractions and miscarry at home. 3) DNC operation.
I had two questions for him that I needed answering.
- This is a missed miscarriage. I am concerned that the longer I continue with this and have not actually miscarried I am at risk of infection. How at risk am I given how long it has been ‘missed’ for? He agreed that I was at risk… but that didn’t really answer my question.
- As I am bleeding heavily and in lots of pain, can I not be given a scan to see if all, part or none of the miscarriage has indeed taken place? This would help me to make an informed decision about the next step. The answer to this was no!
I was sent for a blood test to check for infection, but apart from that was sent home, with 3 leaflets, no examination and no pain relief. I was asked to make a decision based on the 3 leaflets and get back to them. I miscarried that night!
I know that to miscarry naturally is the best option. But to go through passing a 12+ week pregnancy at home, with no pain relief other than Nurofen is hard going. No one had discussed with me what I needed to do with the ‘miscarriage’ and no one discussed with me what needed to happen with regards to any follow-up care. A woman in pain should not be initiating these questions; it should be part of a plan.
I contacted my LMC in the morning and she asked me to bag up the miscarriage and take it down to the local Labtests. She would then fax a form through and it would be sent off for a histology examination. Can you imagine having to do that? The fax was delayed, so I was left in the waiting room, with my 20 month-old son, trying to explain to staff what was in the bag and was not allowed to just leave it with them until the fax arrived. Humiliation on top of everything else!
By this stage I am angry. I am angry that at a time when I should be feeling supported and comforted by medical professionals, I feel alone and an inconvenience. This was when I decided to write a letter to the DHB. This was good decision to make! Not only did I get an immediate response from them for further details, but the Head Registrar of the Early Pregnancy Loss Clinic phoned me later that afternoon in response to this letter, to apologise and to check up on my wellbeing. Would this check-up have happened without my complaint? However, bullet point number 4, at the stage when a woman is going to miscarry, there needs to be a full plan of action with regards to support, pain relief and follow-up medical care. If a miscarriage needs to be sent away for a histology examination this needs to be done sensitively and within the care of the hospital or a GP or an LMC, not at a local Labtests!
I am fast approaching one month since the loss and am healing well, both physically and mentally. My son, my husband, my dog and my family in the UK have been amazing at helping me to heal. I am so incredibly fortunate that between two miscarriages I have been able to have a baby. But I keep thinking about the woman who doesn’t have that precious baby yet. How we she cope being made to feel like an inconvenience? Or having her desperate questions unanswered? Or being asked to bag-up her ‘miscarriage’? I am actually scared for what that could do to a woman feeling that helpless.
I also believe that the only way New Zealand will see real change, is for the subject of miscarriage to be less taboo. Women need to share their experiences and they need to draw comfort from knowing that they are not alone. They need to complain when the standard of medical care they have received is not good enough. Miscarriage needs to be spoken about, openly and frankly, in women’s magazines and on breakfast television. We may then see some urgency for things to change in medical circles, for more funding, for better staff training and development.
Miscarriage is a desperate and helpless situation, but with a little more thought and a little more support, it could be made more bearable.
Thank you, Sadie for sharing your story with us and our readers. It must have been very hard to do and it is certainly a very raw story. I am sure there are other readers out there who may have suffered something similar but never felt they are able to talk about their feelings. It is so sad that these women are not supported emotionally and physically through these tragic circumstances. It would be interesting to hear if the problem is just here in NZ and how other countries support those women suffering from miscarriages or still-births, if they indeed do.
Photo courtesy of iamstellar