I’m Danielle, founder of An Ordinary Mummy and passionate campaigner for greater mental health support following premature birth. Moreover, an increased openness about the long term impact premature birth can have on families and babies long into the future. Following the arrival of my MoMo (Mono-chronic Mono-ammiotic) twin boys at 31+2, a subsequent 33 day stay in NeoNatal (I was discharged after 4 days) and an almost fatal re admission to PICU just 10 days after coming home, the result of bronchiolitis and a hypothermic temperature, I began to experience what I now know to be PTSD symptoms.
With no warning of the impact on my mental health that the premature birth experience could have coupled with a desire to prove I could cope and the sounds of “they were now fine, it was all over” ringing in my ears, I ignored the signs that I need help for three years. In that time the boys, and I, endured several hospital admissions under rushed and frightening circumstances due to weak chests and winter bugs. After every admission I would spiral, crippling flashbacks, self loathing that I had ‘allowed’ this to happen again, a pain so raw and fresh it was impossible to put into rational words.
Through this time I had been sharing, frankly and openly, my experiences of premature birth and life raising preemie twins via my blog, An Ordinary Mummy. I shared my guilt, my sadness that I wasn’t warned about developmental delays and the impact early birth can have. I shared the struggles and isolation of raising preemies and an older sibling and my journey to the realisation that my mental health would not simply improve with time. It wasn’t all downs, when I finally sought help through my GP, around the twins third birthday and following crippling panic attacks, flashbacks and nightmares, I was told I scored high for PTSD but oddly had no depression or anxiety.
Although the conditions are often linked I think it’s important to recognise that they don’t always come hand in hand. I had thought that because I was a happy cheery person, that these infrequent yet intense incidents would eventually pass, this is not how PTSD works. Finally, after three and a half long years I began EMDR therapy. A therapy which aims to reprocess the traumatic experiences, storing them as memories and riding you of the raw emotion attached to them.
The process was upsetting, hell it was one of the hardest things I’ve ever done, but I can now say that the trauma has left me. I get sad when I think back, of course, but these are now memories and not violent recollections thrust into my present. I believe it is absolutely vital that parents of premature and neonatal babies are warned of the very real possibility that they may suffer from PTSD.
A simple questionnaire is all it took to diagnose me and set me on the path to recovery, had this been available at my babies six and twelve month checks, well, it would have saved myself and my husband so many tears. I am one of the lucky ones, through sharing my journey with those who follow me I found a cathartic outlet which helped me cope, which helped me realise I needed to seek help.
Others suffer for years, forever even, this can be so easily prevented. That is why I have begun a petition with the intention of lobbying the government to offer the PTSD questionnaire at babies six and twelve month checks for all neonatal parents. We could save so many families so many years of mental ill health with one simple questionnaire. Of course there is more to be done, the postcode lottery of PTSD treatment must be addressed, EMDR isn’t offered to everyone and some are simply given anti depressants and no counselling.
Additional support needs to be provided on units and more importantly check ups for 3-6 months postnatal. The task is monumental but I truly believe that each small step can help pave the way, each story shared can break down walls of silence and build up awareness and every voice heard can help empower others to seek help and perhaps make their own shout for change. Once you are a preemie parent you are always a preemie parent. I wear my scars and my trauma like a badge of honour, it is a constant reminder that our children are miracles, that life is precious and that we are here only once and what we do to invoke change to better the lives of others and change the things which failed us are the things which truly matter.
You can help Danielle with her amazing campaign by signing her petition here… https://anordinarymummy.com/petition/