Living with Cerebral Palsy 🍋🍋

Sunday, 14 May 2017

Why post-natal/post diagnosis mental health support for special needs Mums AND Dads is so important.....

As we exit Mental Health Awareness week I have noticed a plethora of informative, enlightening, brutally honest and sometimes extremely moving, articles highlighting the subject across social media. Perhaps one that piqued my interest the most was an article  regarding post-partum mental health, in particular focusing on parents who did not have the expected birth experience, and for whom things did not ‘turn out ok’ in the end. The article (which can be found here http://community.fireflyfriends.com/blog/article/post-diagnosis-who-looks-after-special-needs-parents?utm_source=newsletter&utm_medium=newsletter&utm_campaign=post-diagnosis-who-looks-after-special-needs-parents&utm_content=post-diagnosis-who-looks-after-special-needs-parents) inquired ‘Who looks after such parents?’ The answer, in my own personal experience, is nobody.
I don’t think anybody would disagree that support for parents following trauma should be offered as soon as possible. However, due to an extremely underfunded and overworked NHS, this support is rarely forthcoming. My daughter Elin was born ‘flat’ in 2008 following an epic and exhausting labour. All hell let loose as soon as she arrived- my husband was told to pull the emergency red cord above my bed and we waited anxiously amongst the chaos for a cry that never came. We saw only a flash of marble-white flesh as she was bundled onto the resuscitation table next to my bed and ‘worked on’ to no avail, before finally being whipped away and attached to life support, whilst we waited in an empty room not knowing anything for what felt like a lifetime. Her Apgar score was 0 and she was put on a ventilator in SCBU where she stayed as we watched and waited for 11 days until she was finally able to breathe unassisted.
The Midwives who had attended the birth were offered counselling sessions within a week. We were never offered counselling, though we did have the where withal to request it ourselves. I was told that due to high waiting lists we could have an appointment through MIND for December (it was July). So instead we navigated through the following months of horror completely by ourselves: a month on SCBU; then home to a simply crazy number of appointments; massive professional input; weeks spent in and out of hospital; zero sleep; administering several medications a day; tube feeding; watching Elin have seizures daily; open surgery at Alder Hey and finally receiving a devastating diagnosis of severe Cerebral Palsy due to lack of Oxygen she had suffered at birth.
During those dark months we simply survived from day to day. We tried to support one another as our own hearts broke inside us without a second thought for counselling. In many ways it was easier for me, people asked how I was. I was the Mum, I was the one who had given birth and most people understood how awful it had been. But the effects on my husband were equally far-reaching and Dads often seem to be forgotten in post-partum trauma discussions. My husband suffered horrendous PTSD and flashbacks after watching me give birth and observing the ensuing nightmare unfold. It was he who was forced to leave Elin and I in the hospital alone as he informed family and friends of what had happened. It was he who drove home to an empty house and put away the Moses Basket, convinced we would not be needing it (he later told me he drove back to hospital after doing this but never made it- he turned round, drove back home and put the basket back out. He wasn’t ready to give up on our girl). It was him who was warned in grave voices by the doctors that our baby may not make it as I was bathed and medicated in my room, oblivious to these discussions. The first time he saw our daughter through the glass of her incubator, surrounded by machinery dwarfing her tiny frame, he was alone. To say he was traumitised would probably be an understatement. So we both struggled through our emotions after bringing Elin home.
I remember one particular time when I just couldn’t get up from the bathroom floor where I had crumpled. I simply thought I was going to die of grief. Yes, perhaps we could have sought private counselling but it quite literally never occurred to us. Once we brought our baby home from the SCBU there was too much to think about and our own mental health was the last thing on our overflowing to-do list as we cared for a very sick baby.  We needed someone to talk to, to suggest we get help and explain the far-reaching effects of trying to deal with what we later came to understand as PTSD without professional support.
I regularly wonder if we had started counselling in that first six months after Elin was born, would we have had the emotional tools that might have made the following years of devastation perhaps that little bit easier to handle?
Any parent who has received a life-altering diagnosis for their baby in the days or weeks following the birth needs help, it really is as simple as that. An SEN parent friend of mine succinctly explains it ‘It’s like they say this is what your baby has. This is your life now, so deal with it’.

Post- partum/post diagnosis mental health support is SO IMPORTANT!! The healthcare professionals such as the Midwives should absolutely be offered counselling after trauma, but so should the parents. It’s time to find the funding. It’s time to redress the balance.

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22 comments

  1. It's only since writing about our autism journey that I have been able to open up about this. My son was born in 2008 and in my eyes it was traumatic. I had appointments with the 'birth afterthought' service at the hospital a long time after but instigated by me. I completely agree that more needs to be done.

    #PostsFromTheHeart

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  2. Brilliant post as always. You are so right this is such an important issue, both in terms of the need for counselling for both parents and in terms of dads so often being forgotten. You are an incredible lady for sharing your story to help others. #PostsFromTheHeart

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    Replies
    1. Thanks so much lovely! it was so hard for the longest time. Hope it will encourage others to ask for help xx

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  3. Totally relate to this post,following a traumatic birth myself. I also have children with additional needs and its tough sometimes, yet we are just expected to get on with it! How can I give 100% to being the best parent my children need if not feeling 100% myself #PostFromTheHeart

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  5. If it is so heartbreaking just reading what you and your husband went through, I can only imagine what you guys were actually feeling. I can't see how support and counseling wouldn't be needed through all of this. Sending warm thoughts and many virtual hugs your way. #PostsFromTheHeart

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  6. This is such an emotional read but I can relate to it on so many levels. Thank you for sharing your story and raising awareness, it's so important that we do. #postsfromtheheart

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