"It was hard to understand how a full term baby could be so poorly" - Kim's story

I went into labour with our first baby at 41 weeks and two days after a textbook pregnancy. However, due to circumstances that are currently being legally investigated involving a suggested placental abruption that was not acted upon, and meconium aspiration, our baby girl was born blue and flat. She was rushed away for eight minutes of resuscitation.

We later discovered that Blake had suffered a lack of oxygen or blood flow to the brain during birth, causing brain injury, and she was given a diagnosis of Hypoxic-ischaemic Encephalopathy. In our daughter Blake’s case, this was due to a profound hypoxic event of 20-25 minutes.

After being resuscitated, Blake started breathing on her own, but her SATs were very low, meaning that she wasn’t getting enough oxygen and was very poorly.

Blake went on to suffer around two hours of seizures before being intubated and transferred to the NICU at the Royal Victoria Infirmary in Newcastle - 100 miles away from our birth hospital. Blake’s dad drove over to be with her at 3am, meanwhile I was left sobbing in my delivery room alone.

My parents drove me to the NICU upon my discharge the next morning, following the news that Blake had suffered a large pulmonary haemorrhage and that her chances of survival were 50/50.

All of this happened so unexpectedly, it was like a whirlwind had swept us off our feet.

From the moment we both first saw Blake in hospital, we switched to what I call ‘medical mode’ and felt very detached from the fact she was our daughter. We didn’t get the chance to bond with Blake at birth, and not having those first special moments with her was the beginning of my difficulty to bond with her.

During Blake’s time in NICU, we sat beside her cot all day and carried out all of her care and tube feeds, however this was all so unnatural and unexpected, she didn’t feel like our baby.

We couldn’t just pick her up and hold her at any time. She was on life support, several medicines through IV lines, she was covered in pin pricks from previous cannulas, and had more wires and tubes connected to her than we thought possible. We didn’t hold her until she was three days old.

The strangeness of the whole situation for us was emphasised even more by the fact that Blake was born weighing 8lb 7oz, which increased to 10lbs 6oz in two days because of all the fluids. We were also surrounded by a ward full of tiny, premature babies. It was hard to understand how a full term baby could be so poorly to need such intensive, high dependency care.

Considering the fragility of her condition upon admittance to NICU, Blake made a miraculous five-day recovery. She was soon discharged back to our local SCBU where we spent another five days establishing oral feeding.

Initially, Blake took to the bottle well and had her NG tube removed before we were discharged. However, a few weeks after we settled at home, she began displaying feeding difficulties which gradually got worse and by two months old, she would scream at feeding times and totally refuse the bottle.

We explored many avenues with the GP, however this very quickly turned into a severe bottle aversion. This pushed our ability to bond even further away, as feeding time is usually the main bonding time for parents and their babies.

I spent my time very anxiously and paranoid about how little Blake was drinking, and the trauma of it all combined with our birth/NICU experience led me to suffer from severe, crushing postnatal depression (PND), as well as post traumatic stress disorder (PTSD).

None of this was what I expected when becoming a mum aged 20, and the whole experience was very damaging to our bond.

We were thrown into a life we never imagined, full of appointments, diagnoses, medical professionals and terminology. We had so much to digest and come to terms with; the stress totally distracted me from being able to focus on bonding. In fact, it pains me to say that it took around 18 months to even start to feel a bond building.

Fast forward almost three years, I am no longer medicated for PND and PTSD and Blake continues to amaze us each day.

Following an MRI scan, she has significant damage to her brain, a primary diagnosis of HIE, which leads to her secondary diagnoses of Dystonic Quadriplegic Cerebral Palsy Grade 5 and Global Development Delay, along with eyesight problems, feeding difficulties and an NG tube. She has also experienced seizures, and is bordering on an Epilepsy diagnosis.

Blake may never sit unaided, crawl, walk or talk, but she is always making small steps forward with her development and is on track to be staring nursery this year.

I’m happy to say that through it all, we have overcome every obstacle and have together grown a magical mother and daughter bond that gets stronger each day.