How to Know When It’s Time to Try Again

This is something that I have been asked a few times recently. ‘How do I know when the time is right to try again?’ This is a very personal question, and the answer is going to be different for everyone. So, with this post I am going to give a very general answer based on conversations that I’ve had with various bereaved parents.

You are the only person who knows how you feel about trying again, and therefore you are the only one who knows when the time is right. However, there are some things to take into consideration.

• How does your partner feel?
• Have you had all the tests available so that you know any risks in future pregnancies?
• Are you happy with your care team?
• Are you confident that you will be well looked after?
• Do you feel ready, emotionally, for another pregnancy?
• Are you physically healed from your last pregnancy?
• Are you taking any suggested medication?

The main thing is that you, and your partner, feel ready. Rainbow pregnancies are not easy; you are no longer naïve about things that can happen, and this can be very stressful. I would urge you to work with your doctor to make sure that you are fit and healthy, and that any concerns are taken seriously; as this will help to ease your mind.

Some people feel ready immediately, others want to wait a while. What I will say (and I’m being a complete hypocrite here as I wanted to try straight away after Sophie!), is that it is best to wait for tests, especially genetic tests, to come back first; this way you can be sure that the care plan your doctor puts in place for you, is tailored to your individual needs.

I wish you the best of luck when you do decide to try again, and I’m keeping everything crossed for you!

Providing Comfort – Bear for an Angel

Bear for an Angel is an amazing organisation which supports grieving families following the loss of their child, no matter what age or gestation. Bear for an Angel was founded by Michelle McGunnagle who has, herself, suffered several losses and you can read her full story here.

Latest figures show that 1 in 4 women suffer miscarriage, missed miscarriage, ectopic or molar pregnancies, and as early losses are often not acknowledged by many hospitals or care providers these families, often in shock, have to go home with empty arms and a broken heart.

Michelle McGunnagle says ‘At Bear for an Angel we believe that every baby is precious and should be remembered, acknowledged and is loved no matter what gestation or age. We provide comfort & acknowledgement to bereaved families affected by the devastation of pregnancy, baby or child loss. We donate ‘Bags of Love’ to Ipswich hospital epau (although we’d like to offer these to more hospitals and funeral directors eventually), and we also offer our ‘no sew’ memory bear packages to bereaved families throughout the UK’.

Bags of Love:

  • A tiny teddy bear
  • A tea light
  • A mini acknowledgement of life
  • A mini quote scroll
  • Our bear poem
  • Butterfly bubbles
  • A tibeton silver charm
  • All inside a organza bag

 

Our Memory Bear Package

  • An 8 inch teddy bear skin
  • A bag of stuffing
  • A wishing star
  • Our Bear for and Angel poem card
  • A tea light or small candle
  • A teddy bear certificate

Bears for an Angel use the slogan ‘Comfort in a Cuddle’, their bears are a cuddly companion to hug, filling empty arms and helping grieving hearts to find comfort while acknowledging the lives of precious babies sadly gone too soon. Another fantastic thing about these bears is that they are ‘no sew’, which means that a sound device containing the baby’s heartbeat, a spoken message from someone, a scent chip, a vibrating heart or a few ashes or keepsake can be added inside.

There is also the chance to help another bereaved family whilst helping the memory of your babies live on through our Give a bear option which is such a wonderful gift to give. Beyond the bear there is our emotional support network via social media which families find invaluable and is run by bereaved parents so we understand what you are going through.

Our Aims are:

  • Provide an emotional support network via our Facebook & Twitter pages to ease the isolation of baby loss.
  • Connect grieving families via our social media pages & give a bear option a wonderful gift to give to another bereaved family.
  • Provide funding towards our no sew bear packages to provide comfort at times of sadness and to make memories in the UK after any loss, up to 21 years.
  • Provide free bags of love to bereaved parents after loss in early pregnancy to provide acknowledgement in the UK.
  • Provide free acknowledgements of life via download for any loss who didn’t receive any birth certificate.
  • Provide free memorial pages in partnership with Much Loved.
  • Raise awareness of pregnancy, baby & child loss by events, flyers and advertising.

Achievements:

  • We have grown to over 11,000 members on our Facebook page and growing
  • We have helped over 600 families receive a package
  • We funded 36 Xmas comfort packages (DEC 2016)
  • We donated 14 bags of love to Ipswich hospitals epau

Michelle is passionate about baby and child loss and wants Bear for an Angel bags of love in every hospital epu, bereavement suites and silent rooms no mother should go home without anything to acknowledge their precious baby.

Please visit Bear for an Angel if you have suffered a loss, or if you can support this amazing organisation in any way. You can visit their website here.

To ensure that this fantastic support continues they need as many supporters as possible to help with fundraising. If you feel you can help in any way, then please click here.

You can also find them on Facebook, or follow them on Twitter

 

 

HELLP Syndrome

What is HELLP Syndrome?

HELLP Syndrome usually occurs during the third trimester, but around a third of cases occur after the baby is born, rarely it can occur before 21 weeks of pregnancy; it is a rare liver and blood clotting disorder that affects around 1 in 125 women during pregnancy or after giving birth. It is a serious and potentially life threatening condition so please contact your care provider if you exhibit the signs or symptoms.

What is HELLP Syndrome?

HELLP stands for:

H – haemolysis (the red blood cells break down)

EL – elevated liver enzymes (proteins) (a high number of enzymes in the liver is a sign of liver damage)

LP – low platelet count (platelets help the blood to clot)

Symptoms of HELLP Syndrome

The symptoms of HELLP Syndrome are very similar to the symptoms observed with pre-eclampsia (the two conditions are often related). You may experience one or more of these symptoms:

  • Headache
  • Nausea/vomiting/indigestion with pain after eating
  • Abdominal or chest tenderness and/or upper right side pain (from liver distention)
  • Shoulder pain
  • Pain when breathing deeply
  • Bleeding
  • Changes in vision
  • Swelling/weight gain

Your midwife or doctor will check for the following signs during your antenatal appointments:

  • High blood pressure
  • Protein in the urine

The most common reason for HELLP becoming fatal is liver rupture or stroke (cerebral oedema or cerebral haemorrhage), which can usually be prevented when caught in time.

How HELLP Syndrome affects babies

If a baby weighs at least two pounds at birth, they have the same survival rate and health outcome of non-HELLP babies of the same size. Unfortunately, the outcome for babies weighing less than two pounds at birth is not as good; these babies may need longer hospital stays and will have a higher chance of needing ventilator care because their lungs did not have enough chance to develop in the womb. Around 1 in 10 babies born to women with HELLP will pass away and this is often link to their prematurity.

Treatment of HELLP Syndrome

With treatment, the mortality rate of women with HELLP Syndrome is around 1 in 100, although complications can occur in about 1 in 4 women. The only way to treat the condition is for the baby to be born as soon as possible. Many women suffering from HELLP syndrome will also require a transfusion of some form of blood product (red cells, platelets or plasma).

What can I do to prevent HELLP Syndrome?

Unfortunately, there’s currently no way to prevent this illness. Things that could help to make sure it’s diagnosed early are:

  • Regular antenatal check-ups during pregnancy
  • Inform your midwife about any previous high-risk pregnancies or family history of HELLP Syndrome, pre-eclampsia, or other hypertensive disorders
  • Understand the warning signs and talk to your midwife or Doctor immediately
  • Trust yourself when “something just doesn’t feel right”.

How I Feel – 16 Months On

It is so hard to put in to words how I’m feeling as it goes in waves; sometimes the waves can be pretty rough and sometimes quite calm! It’s 16 and a half months since Sophie was brought silently into this world and some days it still feels as raw as it did the day she was born. I don’t think it has gotten any easier as time has gone on – in fact for me it has become harder. I keep thinking about all the things she would be doing now; cruising the furniture, crawling, laughing and playing and it just breaks my heart. I see other children the same age and my heart aches a little bit more, I see clothes which I would have bought for her, or toys which I’m sure she would have enjoyed and it makes me so incredibly sad. The only things I can buy for her now are presents for her grave, that’s the only thing I can do for her and it kills me!

I do have times where I don’t feel so bad, when I’m looking after my other children or my mind is occupied with something else. But at the moment, with the children being on summer holidays, I am finding it particularly tough. When we take them out somewhere I am continuously reminded that Sophie should be there, she would now be at an age where she could get more involved… and it’s tough… really tough.

I have written before about how you find a ‘new normal’… where things will never be the same again but you find new ways of coping and this is very, very true. My ‘new normal’ now consists of me looking towards the future with my midwifery degree looming, looking after my family, making sure that Sophie is remembered and thought about, and helping to support other bereaved families while also campaigning for safer pregnancies and births. There is a link to our support group at the top of this blog, please feel free to join as it can really help to connect with people who have gone through this.

I still find it hard to talk to my husband, as he still tends to shut off! And I am finding being without my little girl very tough, but I feel privileged to be able to share my journey with so many people. xxx

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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