Bewildroament – Adam, Heather and Willow’s Story.

All any parent wants for their child is good health, it’s something every parent worries about – from the moment of conception, to the birth and beyond, we always ask: “Is my baby healthy”? That’s why we attend the check-ups, antenatal appointments and anomaly scans, as it assures us that our baby is safe and developing ‘normally’. But for parents of a premature baby it’s a whole different ball game. Instead of the usual joyous birthing and parenting rituals, such as listening to your baby’s first cry, holding your little one in your arms and responding to their every need, you are instead left with uncertainty and fear. From the moment your baby is born you are surrounded by a horrifying silence as you listen eagerly for your baby’s first cry. There’s no happy tears, no emotional birthing cuddles. Instead, you are left with empty arms as the doctors work tirelessly to try and resuscitate your baby. You catch a brief glimpse before your baby is rushed away to the neonatal unit to be stabilised, and hours pass before you know whether or not they are alive. 

When Willow was born 16 weeks early, doctors described her as being ‘on the edge of viability’. Weighing just 1lb 7oz, we were told that she was unlikely to survive and that we should prepare for the worst.

We spent four months in hospital with Willow, and the experience has greatly affected both of us. The usual exciting baby milestones that all parents look forward to were replaced with a whole new world of risk and medical jargon that we never dreamed existed. There were many occasions where we saw Willow be resuscitated, and we cannot even begin to describe the emotions that ran through us each time that happened. We had to watch her go through so many painful procedures, it was awful. We were literally dealing with death every single day, her fragile life hanging in the balance, we felt so powerless.

Pregnancy, birth, and parenting – they are all supposed to be the happiest moments of a parent’s life, yet they were replaced with sadness and fear. The most painful part was the distance, somehow the plastic incubator seemed like a brick wall between us and our baby. We grew bothered that the incubator did not come even close to replacing the safety of the womb. We had to watch from afar, respond not to our baby’s cry but to each beep on the machine. We became obsessed with the monitors, staring at the screens and closely scrutinising each and every chart; it was the only way we felt in control.

Everything has been a surreal experience, day by day we battled with our emotions but there was no formal mental health support or counselling available for us when Willow was in hospital. We were both really struggling with the experience, with our emotions, having terrible flashbacks. Then on top of everything we were going through, Heather’s dad and step-dad died unexpectedly; there’s only so much stress one person can take.

The adrenaline kept us going day by day, but ultimately our mental health suffered. We both experienced Post Traumatic Stress Disorder, Depression and Stress. We were desperately in need of support but had no one to talk to on a personal level, no one to understand what we were going through. I suppose when you’re a parent of a premature baby, it’s sometimes hard to find people who you think will understand what you’re going through. It was all a very isolating and upsetting experience, which in turn made parenting very difficult.

During our time in hospital we did get some informal support from the neonatal nurses, and that support was amazing and very much needed. The nurses would chat to us during breast milk expressing, and they genuinely cared for our welfare. Heather was seriously ill after the birth and was not allowed to see Willow for nine days due to the infection risks; so the nurse would take pictures of Willow to Heather, she also made her little books showing Willow’s development, and brought Willow’s blankets to her so that she could smell Willow’s scent. The Bliss nurse would also come and chat with us and try to help us with practical things like finances.

Money is not something a parent wants to think about when their child’s life is literally hanging in the balance, and you do feel guilty for thinking about these things, but the reality was that although our world had stopped, the rest of it hadn’t and bills still needed paying. People don’t realise the financial implications of having a premature baby, Willow being born early meant we lost 4 months of full time wages, then there was time off work ill, not to mention the costs associated with living a 66-mile round trip away from home for 4 months. But we had to make ends meet and we learnt to live a very basic lifestyle.

Eventually when Willow was out of hospital and we were back home, we were able to see the GP and finally get some much-needed help and therapy.

Five years on and our experience hasn’t left us, but it has reminded us just how precious our time is together. We try and find something positive in each day, and yes some days we do have to look that little bit harder, but there’s always something positive to hold on to.

We now live a very simple life, we left our careers, sold our house and our possessions, and we are using the money to live an alternative lifestyle in our campervan. We raise money for charity where we can, and we share our family journey with others on social media in the hope that it will bring them comfort, positivity and strength. There will come a point when we will have to go back to conventional living, but for now we are enjoying life, creating positive memories together and focusing on being happy.

Having a premature baby has definitely been the most challenging experience of our lives, and to be honest I’m not sure how we managed to survive it, but it has been a learning experience that has changed us for the better.

Facts & Figures

79% of parents said a neonatal stay affected their mental health

Leo’s saw a 337% increase in need due to COVID-19

Did you know, reading to your baby in the NICU helps their development?

Leo's Neonatal

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