“Elsie is our true miracle who has defied all odds” - Laura’s story #ByYourSide

Our baby Elsie was born at 27+4 weeks gestation after I unexpectedly went into labour. I had a difficult pregnancy and bled up to week 14, but since this was my first child, I had nothing to compare it to.

Elsie was due to be born in October 2020 but in mid-July 2020, I started to bleed and had tightening cramps. I was experiencing pain throughout my pregnancy as I have endometriosis, so my initial thoughts were that it was just my condition getting worse as the baby grew.

However, the cramping got worse (which I now know were contractions) and I went to the hospital to get checked. I was advised that I was not contracting as the CTG did not show this and that the explanation for my bleeding was an ectropion on my cervix. I was sent home on Monday but by Wednesday the pain was unbearable.

I was returned to hospital and to my horror was 8cm dilated. I remember being rushed into a room with around 20 people, with a small incubator with a hat and a blanket; an image that will stay with me forever. I was told that Elsie was on her way and that she would be born very soon. My waters hadn’t even broken at this stage.

I screamed at the doctors to make it stop and to ‘make her go back in’. She was too small in my mind to survive or be born unscathed. I was placed on bed rest whilst steroids, magnesium and the like were administered.

Elsie managed to hang on for around 12 hours and was born the next day. She let out a small cry when she was born but when asked if I wanted to look at her, I said no. If I looked, I would love her, and she might be taken away from us. I asked God to take me as well if she was not going to survive.

Elsie was rushed to the neonatal unit at Barnsley Hospital whilst I was taken into theatre following a haemorrhage and retained placenta. I remember thinking that this was my worst nightmare coming true and I was helpless.

Elsie spent a total of ten weeks on the unit; the care given to her and to us was second to none.

She did well at the start and only required CPAP for a couple of days, then oxygen. I really started to believe she may pull through and even more so, come out unscathed from this.

We then got the devastating news that a routine ultrasound scan on her brain had revealed a peri-ventricular flare, and a second confirmed the presence of peri-ventricular leukomalacia (PVL). PVL is a common brain injury in premature babies and presents a real risk to their future mobility and speech. We were told that she would have a 50% chance of developing cerebral palsy, the extent to which was unknown. There was a genuine chance she would not walk or talk.

Our world was shattered. I ended up spiralling into an intense depression and was diagnosed with PTSD. It was by far the worst time of our life. My husband, Elsie’s dad, had to return to work as he was self-employed, and my maternity leave started immediately (as required by law). We could only visit Elsie once a day due to Covid-19 regulations in place at the time, meaning that once we entered the unit we couldn’t leave for fresh air or a breather.

Bliss was amazing and helped us both. The literature on the unit was very informative and the charity would respond to any emails straight away. We will be forever grateful for their help.

I remember in desperation researching all types of treatment. I recall searching Facebook in the hope that I would find a story of PVL with a positive outcome. I came across a little girl in Australia who too had been born prematurely with the condition and had a mild cerebral palsy as a result.

In Australia, physiotherapy is implemented straight away in these circumstances, so when Elsie was discharged from neonatal, we put her in intensive private physio and did exercises at home with her. I remember thinking that the newborn stage was completely taken from me; I couldn’t just sit and play with my beautiful baby girl as I had to make sure everything was physio-based and centred around a desperate need for her to reach her milestones. I became obsessive.

Some of my family members thought I was crazy for putting her through physio, but I don’t think they understood the severity of what could be. We will never really know if the physio helped but it certainly hasn’t done her any harm.

When Elsie took her first steps, it was the best day of my life. She continued to go from strength to strength and had small orthotic boots to help. She has a very slight tightness in her left leg, but this does not limit her in any way.

Elsie is now three years old and a whirlwind to say the least. She can walk, run and climb and her speech is amazing for her age. We have been incredibly fortunate in this sense, but it wouldn’t have mattered if she couldn’t have done these things; she would have still been Elsie.

One piece of advice that I would give to Mums especially is to try and control any guilt before it completely consumes you. I have since learnt that I needed intensive treatment when carrying Elsie’s sister to term, but I will always blame myself for what happened, even though it was out of my control.

As Mums we will always feel guilt, it is just a case of not letting that overshadow the precious time with your baby and family relationships. I would also advise you to trust your instincts. I am a firm believer that early intervention is key, although appreciate this may not be appropriate and even available in all cases.

We are grateful for our Elsie every day, our true miracle who has defied all odds.