Reflections on Baby Loss Awareness Week

Today marks the final day of the 2016 Baby Loss Awareness Week.

It has been an emotionally gruelling, yet very positive week.

The pinnacle of the week for me was the invitation to reception of the the All Party Parliamentary Group on Baby Loss, as the guest of Bliss Chief Executive Caroline Davey. The Group’s Vision Paper is available to download online.

This Instagram post summed up my feelings that morning:

Today I’m going to the House of Commons, for a reception hosted by the All Party Parliamentary Group on Baby Loss. Looking at this picture, I can remember vividly the way Hugo’s skin felt against mine, the way his little hands would explore my chest, how his tiny but strong feet would boogie and kick as I sang to him. I can remember his smell, too, a rich earthy pure scent miraculously not reminiscent of hospital smells. When this photo was taken I still had hope. Hugo was doing well in his steroid treatment and we all were hoping his lungs would recover enough for him to grow bigger and stronger. For him to return home with us. Home, where Hugo would have as many cuddles as he wanted, unencumbered by an array of medical equipment. To have as many songs as he wanted sung to him, saying ‘again’ demanding his favourites. Seeing his little face light up, his smile, hear his giggle. But that wasn’t meant to be. I don’t have Hugo in my arms, but he lives in through his legacy. Through him I will make sure no one else ever feels like they are nobody’s patient, or that they have nowhere to turn for support in those raw dark days of grief. And I should have written this before putting on my mascara. * * * #HugosLegacy #matexp #babylossawarenessweek #hellpsyndromesurvivor #love #hope #cuddles #movingforward #wellbeing #possibility #captureyourgrief #whathealsyourheart #heartbroken

A photo posted by Leigh – Headspace Perspective (@leighakendall) on

After the reception was a beautiful, very moving remembrance service in the Commons Chapel:

Full of a maelstrom of emotions, I made this video immediately after the event, while standing in the Palace of Westminster:

The next morning I felt emotionally drained yet regalvanised, as I reflected in this Instagram post:

This is in my head today! Bring invited to the parliamentary reception yesterday was a huge honour, and demonstrates how much #HugosLegacy is respected. I approached one of the MPs to ask her to raise in today’s baby loss debate in parliament about parents being excluded from the CQC neonatal and maternity surveys. She was aghast. A way for us to be included needs to be sought, and our voices heard. Sensitivity around bereavement is needed, but that sensitivity is not secured by denying us an opportunity to tell our stories. The resulting reports are read at a senior level by those who make decisions – how can good practice be known about, changes made, support for bereaved parents be provided if those stories are excluded? Yesterday was an emotional day full of hope for positive change around baby loss and support for broken-hearted parents. It has regalvanised me. I also did a big PT session yesterday evening – it helped reinforce just how far I have come in so many ways. * * * #babylossawarenessweek #remembrance #love #movingforward #positivity #hellpsyndromesurvivor #brave #fearless #bold #strong #workout #progress #fitnessfirst

A photo posted by Leigh – Headspace Perspective (@leighakendall) on

Thursday was also the day of the debate in the Commons.

It was a shame so few MPs were present in the Commons for the debate, but let us not be distracted from the point that this debate was groundbreaking, and raised so many crucial points. A range of MPs spoke emotively about their own experiences of loss, and shared stories of their constituents’ losses. Amongst those who took the time to attend there was clearly a passion and commitment at a high level. As Will Quince MP said, by talking about baby loss we will break the taboo.

To see MPs having such a raw, human response, to show vulnerability, helped bring the issues home. Baby loss is real. It does not discriminate.

Amongst the points I was heartened to hear is that it is not enough for parents to be sent away from hospital after their baby has died with a leaflet and a number to call; we need an actual bereavement care pathway. This is in train, and I have been invited to be involved. That hospitals must be more open with families when things go wrong. That there must be learning, so babies do not die avoidably. I was heartened to hear Victoria Prentis talk about her own experiences of HELLP syndrome. As she concluded her speech, she is doing this work so others do not suffer as she has.

Backtracking a couple of days, last Monday was also World Mental Health Awareness Day. On Instagram I wrote about how the lack of support after Hugo died threatened to finish the job HELLP syndrome started:

Today is #worldmentalhealthday and it is also #babylossawarenessweek . This tattoo is on my inner right wrist – it comprises an infinity symbol and a semi-colon. The semi-colon signifies that my story isn’t yet over, that I chose to continue my story. There were very dark days when I felt lost in a vortex, when I felt like things would never ever improve and what was the point? The lack of support available after Hugo died threatened to finish the job that HELLP syndrome started. A consultant psychiatrist told me “God would give me another baby”, a mental health nurse told me I’d just have to get on with it. I’ve seen the looks on people’s faces, sensed their discomfort. But…I have also received so much love and support from many kind and lovely people. I’m so glad I am still here. I am grateful for the EMDR therapy I received, and I am glad I persevered through the additional challenges that threw me, especially while coping with the aftermath of a missed miscarriage. I am sharing this because we need to break the stigma and taboo around baby loss, and around mental health. Talking openly about these uncomfortable issues helps bring them out of the shadows, reduce isolation and despair. A sense that recovery is possible. That life will never be ‘better’, but it will be worth living, in a different way. Talking provides support, light, a glimmer of hope on an arduous path. Being open will help countless others continue their story, too šŸ’–šŸ’–šŸ’– * * * #HugosLegacy #tattoo #semicolontattoo #semicolonproject #mystoryisntover #mentalhealth #mentalhealthawareness #ptsd #ptsdsurvivor #hellpsyndromesurvivor #wellbeing #selfcare #movingforward #hope

A photo posted by Leigh – Headspace Perspective (@leighakendall) on

To conclude the week I made this video with my thoughts about the week. One of the main points in the video is about how grief feels, and how support can make the load feel less burdensome.

There is a great deal to improve the lot of bereaved parents, but this is the beginning of positive change, and I am filled with hope.

2 Comments on Reflections on Baby Loss Awareness Week

  1. Carla S
    October 29, 2016 at 7:46 pm (5 years ago)

    I am so pleased that you amongst others are working so hard to raise better awareness and encourage others to talk more openly. It seems like a lot of progress for it to be talk about it the commons but it is a big shame that not many MPs were in attendance. x

  2. Mary Smith
    October 17, 2016 at 10:40 am (5 years ago)

    I agree Leigh, we need a pathway and more support. Its such a long and difficult path when your baby dies. I would have loved to have been there with you and seen up close these talks and memorials.
    Its always so draining though I agree, you need time following anything connected to you baby to relax and gain strength again x


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