The Hardest Thing

I often help mums who are going through loss and talk to them before, during and after the birth of their sleeping baby, I never tell their stories because whatever they say to me is confidential, and I have too much respect for them to break that confidence! However, one loss mum has specifically asked me to share her story. I was contacted last week via Facebook messenger by Amanda who had just been told that her baby had passed away at 37 weeks… she went for a routine check-up with her midwife, and when they tried to listen with the doppler there was only silence; that is something that I remember… the silence! No heartbeat, no movements and no sounds from the blood rushing through the placenta… just silence. She had felt her son move the night before, but hadn’t felt him that morning; she wasn’t concerned though as he was always quieter in the mornings; this is how her story began, the next chapter in her life, the one where she would have to find a new path without her precious son Daniel.

She was given my details from someone on the ‘Our Angel Sophie’ Facebook page, this person would like to remain anonymous but I would just like to say thank you for suggesting that she contacts me. I always feel very honoured when I’m contacted by people who are going through this, people looking for support, and people looking for a friendly person to help them through it. It’s a very private and sensitive time, but it can also be very lonely, and the fact that I am occasionally contacted to help with support and ideas makes me feel very privileged.

So, Amanda messaged me and explained that she had just got back from the hospital and that they were going to induce her within 48 hours (this seems to happen a lot, they send you home and bring you back 2 days later). She was obviously very scared., upset, worried and angry; it was better to talk rather than message so I called her via the messenger app. We chatted for a long time about her pregnancy, her feelings and what would be likely to happen when she goes in to be induced. We also spoke about making memories, the help in place for after Daniel’s birth and the support that her family have at home. I made suggestions where I could, but I mostly listened.

We kept in touch over the next two days, speaking regularly as she set about packing a bag for the hospital and organising childcare for her other 2 children; while I helped by organising a photographer for her. It is always heart-breaking when I am helping other loss mums… that agony is something that I wouldn’t wish on anyone! But I feel privileged that people trust me enough to let me offer support; as I’ve said before, it’s a very frightening and lonely time, and just having someone to talk to can be really helpful.

I kept InTouch with Amanda via message on the day that Daniel was born, I thought it best to leave her and her husband alone so that they could just ‘be together’. I did say she could ring me any time and left it at that… although she was never far from my mind! She phoned at 11pm to let me know that he had been born and how perfect he was. She sent me photos of her sweet angel and Daniel was absolutely gorgeous.

Amanda went home the next day and she phoned me to thank me… when it should be me thanking her! It is such an honour to help someone through such a devastating time. Amanda has asked me to share her story with you.

I keep in touch with her and I think I always will.

Bereavement Midwives – Experiences and Opinions

My own experience with the hospital bereavement midwife wasn’t a very positive one and I wanted to discover whether more can be done to ensure that people are more supported by the bereavement midwives after they leave the hospital. I went about asking for experiences and opinions from other loss parents; and to be honest it is completely mixed! Some had amazing support, while others had awful, or non-existent support!

My Experience

After we lost Sophie we were assigned a bereavement midwife by the hospital; she wasn’t working the day that Sophie was born and therefore we didn’t meet her before the birth; however, we were induced two days after we were told that Sophie had died so she really could have made contact during that time to offer support and explain what would happen… it’s a very scary time and that would have been helpful! She was working the day after Sophie was born, but she still didn’t come to the bereavement suite to meet us before we left as she was ‘really busy’, so the hospital chaplain came in her place.

In fact the first time I spoke to her was the day after we got home when I wanted to go back to the hospital to see Sophie before she went for her post mortem; I telephoned her number and left a message for her to call back… which she did and then she met me at the hospital. The first time I met her she seemed pleasant, she asked how we were coping and if there’s anything we need help with. I asked for a referral to bereavement counselling for my son (I am still waiting for her to do this and ended up going through my GP!). After I visited Sophie she explained about how long the post mortem would take etc, and said that she would keep in contact to see how we were; and to please phone if I need to talk to someone as that’s what she’s there for.

I did telephone a few times (always got the answering machine!), and it always took 24 – 48 hours to receive a call back, and then she was nice on the phone but didn’t action anything she said she was going to!, she has never once visited me or invited me to any appointments, she did not attend Sophie’s funeral and she has not acknowledged Sophie since… I have heard from some people who, for instance, received a letter or a ‘thinking of you’ card on their baby’s birthday… we didn’t even get a phone call! I personally think she’s in the wrong job!

Experiences by others

I asked members of the Sophie’s Angels support group for their experiences and opinions, and the comments were completely mixed! Some positive and some negative. I thought this would give an idea as to what more can be done to support families who have lost a baby.

Positive

I’m always pleased to hear positive experiences about bereavement support… these are some of the comments that were made:

‘So far… AMAZING. I had a side room and the same 2 lovely nurses who looked after me from being admitted to being discharged. Nothing was too much trouble, pain was well managed. Small acts of kindness like letting my husband come/go and stay as much as I/he wanted without restricting us to visiting hours. Giving him a pass to the car park so we didn’t rock up a huge parking debt. They fed my husband and brought him cups of tea/coffee. The way they were with Dexter, how they dressed him and complemented him, the gorgeous memory box and ‘birth certificate’ (not an official one as he was born at 20 weeks), the way they brought him to me as many times as I wanted, the pass they gave me to come back to the ward to come and see him as much as I liked after I was discharged. The photographer they got to come and take pictures of the 3 of us, the chaplain they arranged to come and see us, the bereavement midwife who came to see us… if it’s possible to have a ‘positive’ experience whilst going through this I certainly did’

‘My son died at the children’s hospital where they had a group of people specialist in bereavement. They took hand and prints as well as a foot cast of my son, gave us a box with a candle, an angel, seeds to plant a flower, a box to put some of his hair in. The phoned every so often to check on us and they were wonderful’

‘I could write so much about all of the amazing care I received especially my amazing bereavement midwife Nikki. She was my rock when we lost Amelia last year. This time when we lost Sophia in June The care at the hospital was fantastic again. We were in the snowdrop suite again which is nice, my husband never had to leave they set up a bed so we could sleep together. They gave us our beautiful memory box and took hand and footprints for us. Nikki the bereavement midwife came straight up to the snowdrop suite to see me when she heard I was back. I could tell you so many things she’s done for me. She has gone above and beyond. Today she came to visit me and she knew I wanted to go back to the hospital to hold my baby as I didn’t have chance when she was born. My husband didn’t want to see her again and as she didn’t want me to go alone she took me. Sat with me when I cried and hugged me when I needed it the most. She then took me for a hot chocolate and a chat’

Negative

Unfortunately there are also many negative experiences, and more can most definitely be done to help with bereavement support; either before, during, or after the birth:

‘My experience wasn’t so good I was on labour ward for a whole week and I wasn’t allowed in the quiet room till the last night. The midwife’s where lovely, gave me a memory box hand and foot print had a cold cot were really respectful of him asked his name etc and talked to him which was comforting. I can’t fault the midwives, they gave me a lot of emotional support while I was in the labour wars for 7 days hearing births; another lady came in during that time at 39 weeks to deliver a stillborn baby which was heart-breaking all the more. I was given some leaflets and that was it when I was discharged, SANDS send me a letter to attend a candle lighting event every 6 months, but that’s all aftercare I have received’

‘My bereavement care was so poor. The whole care from admission to discharge was disgusting actually. Felt really let down and totally robbed of all the things, the little memories I never got to do that I will never get back. They only had 1 bereavement midwife for the hospital, and whilst she was off the week I was admitted no one stepped in and took her place to guide me and my partner through the process of it all. I had a different midwife and Dr every day and night literally no continuity of care what so ever. The memory box was left outside the room, they all avoided the room like the plague avoided all the questions I had. The midwife who delivered my angel was nice but she didn’t do the care to her full potential, she covered my baby with a towel as if she was a bit of trash, I was totally rushed with my baby, I was given 8 hours with her which I will forever treasure, but I was kept in that night and my baby sent to the mortuary even though they had a cold cot there. Also I wasn’t offered to see my baby again by the hospital, the bereavement midwife txt me and called me when she got back off holiday and explained that the staff hadn’t given me a bereavement info pack that I should’ve got which I later got posted out to me. Also I had to figure a lot of things out on my own. The staff were all so under trained with bereavement care (and I wasn’t even a difficult patient). I was 37 weeks pregnant when I had my little girl who was born sleeping, with no complications what so ever and no cause of death from a full post mortem’

‘I never had one. Wasn’t even offered one. I’ve just struggled through on my own’

‘My care was horrific! My bereavement midwife was none existent. Counselling was a great help but wasn’t offered until 12 weeks after, and by that time I had already attempted suicide! Nothing got explained, because of this we missed out on a lot of memory making’

‘Mine was terrible. I lost my daughter on the 8th April at 17+2 and I’m still trying to get help. I have taken an overdose too. I was assigned a bereavement midwife but only spoke to her once and that was to tell me Elsie had had her post mortem. I’m still waiting for the results. The care I received whilst suffering my miscarriage was on another level of shocking. I’ll never go back to the hospital concerned if I’m ever lucky enough to have my rainbow’

Conclusion

As far as I can see there are some bereavement midwives who go above and beyond to really support the families, while others could do with retraining so that people feel supported and cared for. Small gestures make all the difference… phoning or visiting to see how you are, offering help and support, referring to outside agencies who may be of benefit, attending the funeral, becoming a friend, being approachable and easy to talk to, returning telephone calls, visiting before the birth, organising the birth photographer, hand and foot prints etc, offering to help with any arrangements, recommending funeral directors… there are many things that can be done to help the grieving family and as a bereavement midwife or support worker they really should be doing everything that they can to make this difficult time slightly easier.

Please feel free to join Sophie’s Angels, it can really help to connect with other parents who are going through loss.

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Grief and your married life

It is so important to try to keep a sense of closeness while you mourn the loss of your child; we were told by our hospital chaplain that we have a strong relationship and he can see the love that we have for each other… a lot of marriages and partnerships are ripped apart after the loss of a child; not surprising really when you consider that it’s the most difficult thing that you will ever experience.

I was never actually worried that we may fall apart as, although we have our ups and downs, we have always got through things together. However, the impact of Sophie’s death did have a massive impact on not just our relationship, but on our whole family…IMG_0686 we still keep a sense of togetherness, but things have changed. My oldest son became very withdrawn and suicidal at one point, he is luckily on the road to recovery; my middle son gets sad and has the occasional bout of anger, but this has also got better over time; and my youngest son is too young to realise about his sister, however he does ‘feed off’ of any tension in the house and that can make him either aggressive or weepy. As for me and Paul, I find it difficult to look a young baby and although I am happy for them, I do still feel a pang of jealousy. Paul seems ok, but he is also known to bottle things up.

It can also put strain on a relationship because it can be difficult to understand how your partner feels, and how the grief has affected them; we are individuals and therefore we all grieve differently… men often grieve differently to women and this can put a huge stress on the relationship; understanding and supporting each other is necessary in order to remain a sense of closeness.

Here is an example of the differences that I have either experienced or seen in the past, I have labelled the columns ‘wife and husband’, however, this can be reversed as it is just to give an idea of the differences in the grieving process, neither is right and neither is wrong, they are just different and both are just as valid.

Wife

Husband

Grieving too much Not grieving enough
Wants to try again Doesn’t want more children
Wants to talk about the loss Doesn’t want to discuss the loss
Can’t face going back to work Goes back to work to take his mind off of it
Takes offence with inconsiderate comments Says it’s ok because they mean well
Include your loss when asked ‘how many children have you got?’ Only includes living children when asked ‘how many children have you got?’
Be affected by depression and anxiety Hide their feelings and keep positive
Find faith and go to church Lose faith and stop going to church
Join support groups, talk to other bereaved parents, or campaign for a baby loss charity Doesn’t want the constant reminder of loss
Finds it hard to see a future Wants to look to the future and make plans

So you can see how easily relationships can break down when the couple are grieving in such different ways, the strain is sometimes unbearable… but with understanding you can support each other.

20160311_155055In my personal experience, the grief changes as time goes on, but it never goes; the hardest thing to deal with at the moment is the fact that my grief comes in ‘waves’… it’s been 16 months since Sophie died and I’m still getting waves of grief which take me by surprise. I can be watching TV and something will trigger me (like an advert for mothercare) and all of a sudden, I’ll start crying out of the blue! I sometimes get overwhelmed by things that I used to do (cleaning the house, washing, ironing etc) and I just want to run away from it all… this can cause issues between Paul and me.

I get flashbacks too; I see my pregnancy with Sophie, her birth and her death as if it was yesterday; and I can still remember the conversations we had with the doctors and midwives when she died word for word! I can see, by looking back, where the mistakes were made; but having no way of proving it can consume my thoughts.

After my bereavement midwife explained that we need to try to remain close as a lot of marriages break down after the loss of a child, I set about to find the facts and statistics for this. What I have discovered (and experienced first-hand) is that losing a child will exaggerate existing factors of your relationship. So… some relationships get worse, and maybe end in separation; some get better and you become closer to your partner; and some just stay the same.

As mentioned before, maintaining your relationship will take patience and understanding… it is not easy, in fact the strain can sometimes be suffocating! I don’t have a crystal ball and I can’t see the future, but I am very proud of the way my family have stuck together and I hope that we always will; and with patience and understanding, you will too.

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From Guilt to Relief – Visiting Sophie

 

The sun was shining and Sophie’s resting place was so peaceful. I was sad to see yet another baby has been laid to rest in the baby garden since I last visited. A little boy, the flowers were still fresh from his funeral so it must have been recent (maybe today or yesterday), and I walked over to his little bed and looked at the beautiful flowers, a gorgeous blue and white floral arrangement saying ‘Brother’ stood out to me and made me think about how my own children coped with such a horrific day, I was so proud of them that day. I thought about his family for a moment, fresh in their grief wondering how they were. I can imagine their pain as they try to move forward for their other children, and try to build a life with a piece missing. I absolutely hate it when I see more graves filled in, but what I hate more is seeing freshly dug graves; because I know that the next day there will be yet another family saying their goodbyes to their child… It happens too often and I feel for each and every family.

I sat by Sophie’s grave cleaning and polishing the granite headstone and kerb, and started to talk to her about looking after the newest little boy. I rearranged all her little ornaments and put some fresh flowers in the vase, and I just sat and talked for ages. It was quite an emotional visit, not just because I was visiting my daughters grave, but because I had been feeling so very guilty recently… I hadn’t been able to visit her for a couple of months; it’s not that I couldn’t get there, and it’s not that I didn’t want to… I just couldn’t get passed the cemetery gates! I had no idea where this sudden feeling had come from but I would get to the cemetery gates, my legs would go to jelly, I’d feel really quite sick, and I literally couldn’t go any further! But today I was determined! I was going to see my daughter and I was going to push through that feeling! And I did! I spent quite a long time there today, talking and just sitting! It was really very peaceful and after I got back home I just wanted to go there again! So, I did!!!

I spend so much time supporting others through loss, and today the members from my Facebook group ‘Sophie’s Angels’ and my friends group ‘Otis and Friends’ were the ones propping me up! And I can’t thank them enough!

The photos below show how her resting place looks now.

 

 

I want my baby back!

When I say to people that ‘I’m having a moment because I miss Sophie’, why do they then insist on saying ‘still? Do you think you need help?’. I find it upsetting that I can’t just tell people why I’m feeling sad, all I want is a hug and for them to say, ‘I know, and you have every right to be’. I do have a right to be sad, it doesn’t happen all the time, I don’t sit there every day feeling upset, down or depressed… but I do have every right to miss Sophie.

To put my loss into perspective Sophie has been gone for 16 months… That is not a huge amount of time, regardless of what people think. During those 16 months, my family have been through hell and back, but we still keep pulling through and I am so thankful for the family I have got. However, that does not make Sophie’s death less important and right now all I can think of is I want my baby back! She should be here and not buried in the cold, hard ground… it’s not right, it’s not fair, and it never will be.

Sophie was born sleeping on 11th March 2016 at 2.09pm, that was 490 days, 18 hours and 21 minutes ago; that is not enough time for me to stop feeling sad! Even if I break it down further to 706,701 minutes… it sounds longer but it really isn’t! Every single one of these days I have felt sad moments and moments of regret, I relive what could have, and should have, happened to save Sophie; and I have flashbacks and remember exact conversations that I had with the doctors after Sophie died.

So, for everyone who thinks I should ‘be over’ my daughter’s death by now, but has never experienced the loss of a child… you have absolutely no idea what you are talking about and I hope you never do; because pain like this I wouldn’t wish on my worst enemy. This is a lifetime of pain and a lifetime of guilt and regrets.

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Placental Insufficiency

Overview

The placenta is the baby’s lifeline during pregnancy, it’s an organ which grows in the womb and is connected to the baby via the umbilical cord; it provides baby with Oxygen and nutrients which pass from your blood supply into the placenta and are then carried to your baby via the umbilical cord; carbon dioxide and other waste products are also carried away from the baby by the umbilical cord to the placenta and then into your bloodstream for disposal. Hormones produced by the placenta help your baby grow and develop; It offers your baby protection against bacterial infections while in the womb, and towards the end of pregnancy it passes antibodies from you to your baby which should give him or her immunity for about three months after birth. HowevPlacental+insufficiency1er, it only passes on antibodies that you already have. Alcohol, nicotine and other drugs can also cross the placenta and can cause damage to your unborn baby.

Placental insufficiency (also called placental dysfunction or uteroplacental vascular insufficiency) is a serious pregnancy complication, and usually occurs when either the placenta does not develop properly or it is damaged.

With placental insufficiency, the placenta is unable to provide the baby with adequate oxygen and nutrients; and without this the baby cannot grow and thrive. This can lead to low birth weight, premature birth, birth defects and stillbirth; therefore diagnosing placental insufficiency early is vital for improving the outcome for both mum and baby.

Causes

It is often linked to blood flow problems. While maternal blood and vascular disorders can trigger it, medications and lifestyle habits are also possible triggers. You are more at risk of having placental insufficiency if you are overdue, have diabetes, chronic high blood pressure (hypertension), blood clotting disorders, anaemia, are a smoker, or take drugs (especially cocaine, heroin, and methamphetamine); it may also occur if the placenta doesn’t attach properly to the uterine wall.

There may be areas of dead tissue, called infarcts, within the placenta which result in reduced blood flow in those areas; often these are caused by a problem with the vessels within the placenta. Certain conditions are known to increase the number of infarcts within the placenta, such as pregnancy-induced hypertension. Infarcts don’t usually affect the unborn baby; however, in certain cases and especially in women with severe hypertension, the reduced placental blood flow may be enough to cause poor growth and even stillbirth.

Symptoms

Regular antenatal (prenatal) appointments are essential as there are no maternal symptoms for placental insufficiency. However, the mother may notice that her bump appears small or her baby may be moving less than expected.

Complications

A pregnant lady who has placental insufficiency is at greater risk of preeclampsia, placental abruption, and preterm labour and delivery. However, the risks are far greater to the growing baby and the risks for the baby include:

  • Oxygen deprivation at birth (which can cause hypoxic ischemic encephalopathy (HIE), seizures, brain damage and cerebral palsy)
  • IUGR
  • Learning disabilities
  • Hypothermia
  • Low blood sugar
  • Low blood calcium levels
  • Excess red blood cells
  • Premature labour
  • Death

Diagnosis and Management

Regular antenatal care can improve outcomes as it helps your provider to diagnose placental insufficiency earlier. A range of Tests are used to diagnose placental insufficiency; these include: taking measurements of the fundal height during routine antenatal appointments, pregnancy ultrasound scans to measure the size of the placenta, the size of the baby, and check the placental blood flow, non-stress test to measure the baby’s heart rate, movements and contractions, and sometimes you may have a blood test to check the alpha-fetoprotein levels in the mother’s blood.

If you have high blood pressure or diabetes then treating these can help to improve the baby’s growth. Placental insufficiency can’t be cured but if it’s detected early enough then it can be managed with regular antenatal care. The consultant may recommend looking for any signs of preeclampsia, more frequent appointments, regular ultrasound and foetal doppler scans and if necessary admission to hospital so that it can be continuously monitored. You should also pay very close attention to your baby’s movements and kicks, and any changes in these should be assessed straight away. If there is concern about premature birth then you may receive steroid injections; these dissolve through the placenta and strengthen the baby’s lungs.

Future Pregnancies

In future pregnancies, you are likely to be monitored much more frequently with many more ultrasound and doppler scans and more antenatal appointments. Your consultant may suggest you take low dose aspirin, although you should speak to your doctor first about this, and may also suggest anticoagulant injections such as Fragmin or Lovenox… this will however depend on the reasons for your placental insufficiency. If you have diabetes then this will be carefully monitored and a suggested treatment plan will be put in place; and any bad habits such as smoking or drug misuse should be addressed.

There really isn’t very much that can be done to prevent this from happening. However, careful monitoring and good antenatal should improve the outcome.

placental insufficiency