What I Want The National Maternity Review Team to Know

The National Maternity Review is going to be assessing current maternity services, and consider how services across the country should change to meet the needs of women and babies.

My son Hugo was born in February 2014 when I was just 24 weeks’ pregnant because I had the rare, life-threatening pregnancy complications HELLP syndrome and preeclampsia. The day before Hugo’s birth, I had been transferred to a specialist hospital two hours away from my home. Hugo died in my arms aged 35 days.

I have written about my experiences extensively in other posts on my blog. To very briefly summarise, there is nothing I can fault in the clinical care either Hugo or I received. However, there were many issues surrounding communication that could have prevented further stress in an already heartbreaking situation.

Hugo’s Legacy is about helping other women who suffer birth trauma, other families with a baby in neonatal care, and parents who lose a baby. Anyone who experiences any of these things deserves compassionate care, and a streamlined system that enables people to get the support they need, rather than battle against it.

So this is what I would like the National Maternity Review to know:

That every woman is individual.

That evidence is vital in the context of providing safe care. But to recognise that evidence cannot tell you everything. Each woman, each situation needs to be considered according to its own merits.

Postnatal care – Hospital

That any new mother separated from her newborn baby for clinical reasons, as Hugo and I were, should be reunited as soon as it is clinically possible.

That no new mother should be left in an intensive care bed, her baby in the neonatal unit fighting for his life, feeling that she is the least important patient on that ward.

There should never be a delay due to interdepartmental squabbling about beds, and to which department the responsibility of taking the mother to see her baby belongs. (This happened to me in intensive care).

That postnatal wards need to have a greater awareness of the needs of mothers whose babies are being cared for in a neonatal unit. It is difficult enough for us being on a ward with women who have their babies with them. Please don’t delay us visiting the neonatal unit to see our babies because of a lack of coordination between maternity and neonatal about timing of rounds. Please don’t force us to make our own meal arrangements because the food that is provided sits getting cold on a tray next to our postnatal bed, while we are spending precious time with our baby.

Me and Hugo

Me and Hugo

Postnatal care – Community

That better consideration needs to be given to the postnatal care needs of mothers whose baby is in neonatal care, especially when the woman has been transferred to a specialist hospital away from home. The pathways need to be clear, sensible, and appropriate staff aware of them. For example, at first I was told I would need to make the four-hour round trip to see my own GP – impossible. Then I was told I would need to register with a local GP – challenging. Eventually I was able to see a community midwife at the hospital.)

Support for Birth Trauma and Bereavement

That no bereaved parent should return home with empty arms and feel cast adrift from the hospital. To have to find their own support. To have to make telephone call after telephone call explaining an illness they do not yet quite understand and have to say the ‘D’ word again and again. To feel like such a failure as a woman and as a mother. To have to relive everything that happened again and again because services in the 21st century seem not to find the capability to communicate with one another.

That there is support for women who have experienced birth trauma, and for bereaved parents, but people need to know about it – professionals need to know about it so they can direct parents accordingly. Let’s use some of that 21st century communication capability to close those circles, make those connections.

That when a woman makes a complaint about her care, (or feeds back about her care in any way) they are listened to respectfully. That they are made to feel like a human being with emotions with a response that includes words like ‘sorry’ where appropriate. That they do not receive a response that feels like a report to the trust board, a box ticked. That they are reassured learning has been made so no other woman has to suffer the same upsets, the same heartbreak, the same trauma. The same nightmares.

That Language Matters

No mother should ever be told by a panel of consultants their recommendation to ‘withdraw treatment’ for their child while that same panel of consultants stands, mouth agape as the mother lies crumpled on the floor, sobbing as though her heart has been ripped out of her chest. Which it has.

No mother should have to be told dismissively “all mothers feel guilty”, as if that is a salve on their pain.

No mother should have to read in a referral letter inaccuracies about the details of her son’s life and death, and for the GP who wrote it to phone her to apologise with the excuse that they did not read her notes because they were ‘too busy’.

No mother should be made to feel like she is abnormal because of what the trauma of her own life-threatening illness and grief over the death of her son has done to her mind. Instead, she should receive compassionate support to help her understand, and live with the trauma.

This is part of my story, a snapshot of my life and experiences since February 2014. There is nothing that can be done to undo what happened to me, or to Hugo. There is nothing that can be done to bring Hugo back.

But there are things that can be done to prevent other women suffering such unnecessary additional upset and torment.

That is why I would like the National Maternity Review to read, to listen, and to take account of my experiences.

In Hugo’s memory.

21 thoughts on “What I Want The National Maternity Review Team to Know

  1. Dani says:

    Thank you for being a voice for those who can’t (or simply won’t) talk about their experiences. Life reminds us there is always someone whose story mirrors our own: we must simply find them or wait for them to find us.

    Blessings to you and your precious Hugo.

    Under the same sky,
    Dani

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  2. Nikki says:

    Your story makes me so sad and angry. It brought back memories of the birth of my twins. They were prem and had twin to twin transfusion syndrome (a placental complication in identical twins that share a placenta) and were taken to NICU straight after birth (c-section). I did not hear or see one of the twins at all until 8hrs after the section which was so hard. Especially being in the recovery ward with women and their new babies. But what was worse was the 48 hours or so on the post-natal ward once I was moved out of recovery. I was trying to get to NICU as much as possible to see my babies and express milk for them which meant I missed meals and the drugs round on a number of occasions. On my return to the ward I asked for some food and some pain relief but was told that they couldn’t order meals after I’d missed meal time and that there was only one midwife able to dispense medication and she was busy. This was a Sunday evening so it was particularly difficult to get food and pain meds as the shops were shut. In the end I had to get my husband to bring paracetamol and ibruprofen from home for me, for which I got told off for as it was against hospital policy. The worst thing was feeding – I was trying so hard to express for the boys but straight after the section I couldn’t walk to NICU (it was a 15 min walk from maternity) and there was no-one available to take the milk, so it went bad and had to go down the sink. I cried my eyes out, it had taken a super human effort to get that milk and the boys didn’t even have it, they were given formula. It all got a lot better once I was moved out of post-natal to transitional care where all the mothers had sick babies or babies in NICU but those 48 hours will stay with me for a very long time.

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    • Leigh Kendall says:

      I’m so sorry to read of your experience, thank you for taking the time to share it with me. I understand how such an experience stays with you – it gets deep in to your bones, doesn’t it? Hugs xxx

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  3. Summer says:

    Really appreciate your post as it’s something that needs to be heard. I was at an NHS hospital last week due to severe bleeding ( 11 wks pregnant ) and I thought I was losing my baby. On arrival they told me the wait to be seen was atleast 4 hours – my bleeding had already filled a pad in 30 mins … Was I to sit there and bleed all over myself ? They wanted me to do a urine test – I asked if I could do it just before I see someone. The lady said “best to do it now, some women arnt even pregnant anymore and you don’t want to waste your time”. I was totally shocked by this insensitive answer and said “great, thanks for the confidence”. At this point another lady in early pregnancy was in extreme pain. Her friend came and asked for a hot water bottle or something …. The reply was “we have nothing for her”. What!? A hospital can’t even get a woman in pain a heat pack?!? I was totally disgusted and very upset. I called a nearby private hospital – got an immediate appointment and had amazing, caring, kind service. The lady at reception sympathetically gave me a new pad when asked … she knew why I was there and her look of concern warmed my heart after my NHS experience. Why can’t the NHS be like that ? It costs nothing to be kind, caring and sympathetic.

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    • Leigh Kendall says:

      I’m so sorry. When you’re ready, you might like to feed back to the hospital about your experience. There’s nothing that can make your experience any better, but by telling services how we want to be treated – with kindness, care, ad empathy (I know we shouldn’t have to) we can make our voices heard. xxx

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  4. Diane Somers says:

    I had a planned section at 36+6 weeks and my little boy was admitted to intensive care with very low blood sugars. I was in a section bay on the ward initially with mothers who also had sections and their babies with them and felt that I was just left in the corner of the bay and not needing the extra support that the mothers with their babies received – I needed emotional support!
    I used my mobile to call down to intensive care to ask how my baby was doing and the nurse asked me to be taken to see him on my bed as they could accommodate me which was fantastic as I got to hold him out of the incubator for an hour. The next day I was transferred to a bay on the ward solely for mothers whose babies were downstairs in special care which helped to be surrounded by mums in the same position as me. I had to ask for regular pain relief and it really was dependent on which staff were on each shift as to how I was treated – luckily most midwives were very compassionate and I even returned one evening from special care to find a drip of IV pain relief ready and waiting for me as they knew I had been down with my baby for a long time and I was in a lot of pain on my return.
    My hospital try their very best to keep pre-natal, section mums, special care baby mums and other cases in separate bays on the ward to ease the stress of mothers which was appreciated.

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  5. Rohini says:

    I am so sorry for your loss. I can’t fault the emergency care I received when I went into labour at 30 weeks away from home at a hospital in South West London. I went on to have an emergency section and again the staff were wonderful. But the hardest thing was going to the normal post natal ward with all the new mums and my baby being in neo natal care. I couldn’t bear it. Today I am very lucky to have a beautiful boy but those first weeks were the hardest time and I still find it very difficult to think back to them. Well done for raising our voices.

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  6. Goldie says:

    You are so forgiving. I feel so angry for you whenever I read about what you and hugo went through. The fact you struggled to see him due to coordination between two departments just breaks my heart. Increased sadness and heartache that could have been avoided.x

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    • Leigh Kendall says:

      I’m still angry in many ways – things needn’t have happened the way they did. But I try to channel that anger into something positive to help others because there’s nothing I can do to change what happened. Thanks for your lovely comment xxx

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