Lillie's story...

It was June 2022 when I first saw those 2 pink lines, even though I had a gut feeling before this. We couldn’t be happier, our family was growing. It had been 6 years since we had your older sister and she was so excited to be a big sister. The pregnancy was routine and going well, until one day it wasn’t. I started bleeding around 20 weeks and I was admitted to hospital. We weren't sure on the cause of the bleeding, but the doctors were concerned and we had discussions on what would happen if I were to go into labour this early, as at that gestation baby wasn't considered "viable". Luckily it stopped and we were heading for the all clear. I was later diagnosed me with gestational diabetes and was monitored closely from 28 weeks. We took it week by week, constant scans and monitoring, and they decided to deliver at 37 weeks.. I had concerns and worries as I had high risk factors; diabetes, high BMI, bicornuate uterus, which risked preterm labour.

36 weeks and 4 days our world stood still. I had a placental abruption after the short car journey home from my mother in laws house. Your sister was crying and screaming as she saw the blood and could hear the panic in our voices. We dialled 999 and an ambulance arrived, and as soon as we arrived at the hospital it felt like chaos. They checked to see if I was dilated and they searched for the heartbeat. The emergency buzzer was pulled, we were in shock at what was happening. You came into the world at 12:10am. I had an emergency c-section under general anaesthesia, which means I didn’t get to see or hold my baby. It was over 12 hours before I saw her for the first time, and within the hour she was transferred to another hospital. When I later arrived at the NICU I was told the diagnosis; HIE. Hypoxic ischemic Encephalopathy. A lack of oxygen leading to damage to the brain. Our tiny little baby was going through so much and I couldn’t help but feel so many emotions and betrayed that my body did this to me.

Our baby had active cooling treatment to prevent any further brain damage, and she felt so cold to touch. There's so much uncertainty with HIE, and were told to "wait and see" if this had any benefit. We spent 8 long weeks in the NICU, blood transfusions, temperature control issues, lack of sucking reflex and unable to take a bottle or breastfeed. We were discharged with an 8 week old baby who was reliant on tube feeding and a lack of support in place. Several weeks of midnight hospital visits because of complications with tube feeding and lack of communication with dieticians and specialists meant a lot of PTSD and PND. This wasn’t what I expected for my daughter's life. It wasn’t fair.

After a few weeks we were back in the hospital. The seizures worsened, there were new diagnoses and medications, and specialist appointments. Despite this, we were ready for Lillie to come back home with new arrangements and care support, but then I got "the call"....

"Lillie is very poorly, we think you need to come in."

I grabbed my eldest and we headed straight there. When I arrived I was told Lillie had suffered a cardiac arrest, and with intervention they had managed to resuscitate her, but she was now on the ventilator and urgently needed transferring to Great Ormond Street Hospital paediatric intensive care. 

Lillie had already been through so much and showed so much strength, but the damage was global and significant, affecting her brain stem and most primal reflexed. The doctors said it was 50:50 chance of survival if she came off the ventilator. We chose to take her off and not to intubate again. To just hold her, and make her comfortable, and ultimately, see what she decides.

We made memories with hand prints and footprints, spent time just touching her skin and being present. we soaked her in for as long as we had her. The moment finally came, and we just held her and cried until she took that last breath. We played songs for her, washed and dressed her, and for the first time, admired her beautiful face which was finally free of wires and tubes. 5 months of our Lillie. Far too Short but every moment cherished.

It’s been 3 years but it still hurts every single day. Her sister is still struggling now with not having her baby sister cuddling her or running around after her. Loss is a very powerful thing and not something you understand until you’ve been there. We will never forget our daughter, and everyday we are reminded, she is still here with us, safe in our hearts. 

Lillie's mummy.