In today’s busy world, would you please spare 17 minutes?
17 minutes to think about and understand how I felt four years ago when my daughter Layla was born six weeks early and had a cardiac arrest.
Just newborn, she needed resuscitation for 17 minutes.
For 17 minutes I thought my tiny little baby girl was going to die. For 17 minutes my heart broke over and over again. For those 17 minutes the world stopped.
It was the hardest time of our lives, the worst time to ever go through.
The precious little life I brought into the world was fighting and I could do nothing. My only hope were machines and procedures that I had no control over.
During those 17 minutes, Layla suffered a lack of oxygen that caused damage to her brain and she was left with a brain injury called hypoxic ischemic encephalopathy. She spent 89 days in the Neonatal Intensive Care Unit (NICU).
Our lives completely changed. Everything we had once considered normal was no longer possible and all the routines and the everyday life we once took for granted vanished in an instant.
I had to change myself and my life to support Layla in every way she needed.
Layla also has cerebral palsy, microcephaly, a condition that causes a baby’s head to be smaller than expected, and epilepsy.
She suffers from daily seizures.
Alongside this she is registered blind, has heart murmurs, and she was admitted into hospital every month when she was a baby because of urinary tract infections caused by kidney failure.
Then, at around eight months old, Layla developed severe breathing difficulties and was diagnosed with laryngomalacia, a condition that caused her airway to collapse. She had surgery to remove her adenoids and to have a tube fitted in her abdomen and into her stomach for feeding.
With help from my partner Anthony, we care for Layla full-time. It is 24 hours a day, relentless, day in and day out. We don’t have any respite and don’t get any time for ourselves, to sit down, to eat, to have a shower, for those small everyday necessities you take for granted. It is exhausting and overwhelming.
I had to give up work to care for her - it wasn’t just a job I lost, it was something just for me.
When Layla was three months old, we were referred to Rainbow Trust by the Neonatal Intensive Care Unit. After coming out of the clinical hospital environment that had become our normal for three months, the best thing we did was take that support from Family Support Worker Brodie.
Without Rainbow Trust I wouldn’t be in the place I am now.
When Layla first came out of the hospital, she slept very little due to her condition. It was an incredibly tough time and Brodie was instrumental in ensuring we got valuable respite. She took Layla out to the park and did some sensory play with her, giving me a couple of hours to myself, to get some jobs done around the house, to have a shower and to catch up on sleep.
Going through what we went through is hard, we really struggled. We were emotionally drained, mentally exhausted.
Before Rainbow Trust, the support we received was mainly medical. To have someone that is not there in a medical capacity, that is there to support us in any way we need is amazing. I would never have had that support without Brodie, I would never have got through it.
One thing I really struggle with is getting Layla to hospital appointments as they are often out of town. With so many to attend, travel is a big worry for me, especially as I don’t drive. Relying on public transport is not only expensive but any delay could mean missing vital care and tests for Layla.
Brodie’s support with this has been such a relief. She takes us to appointments, easing some of the stress I feel, allowing me to focus on Layla and her needs, and most importantly ensuring that Layla does not miss out on essential appointments.
These journeys also give me a chance to talk. I’ve built such a strong bond with Brodie that I feel comfortable being completely open with her. Just having that time to chat and offload makes all the difference.
Due to Layla’s complex needs, she receives care from four different hospitals meaning travel can be long and appointments become overwhelming. It is exhausting to go between hospitals, having to see, deal with and understand so many different people, all strangers, and to keep on top of everything.
Brodie comes into the hospital with me and attends the appointments to ensure I understand the medical language, don’t miss any crucial information, and that I have someone I can talk to if needed. She also looks after Layla, keeping her occupied so that I can focus on what the doctors say without worrying about her.
Hospitals are functional, cold and busy places. Brodie helps to bring a little bit of normality to Layla and to me — sometimes just by buying me a coffee. My focus is always on Layla, and I often forget to think about myself or what I might need. Brodie does that for me. She helps me take care of myself.
I am very big on making memories, on making the most of my time together with Layla and on trying to give Layla wonderful moments amongst the long hospital appointments and medical care.
However, due to Layla’s complex needs, going out as a family requires significant preparation and time. It is very difficult. Finding accessible places to go, preparing Layla’s feeds for the day and ensuring we have all her medication makes outings feel impossible.
With Brodie’s support, we have been able to attend days out planned and hosted by Rainbow Trust’s team in Lancaster, to SeaLife, farms and parks. Brodie provides transport and supports throughout the day to ensure we can focus on spending time together outside the home and hospital, giving me the opportunity to make memories with Layla that we otherwise would not be able to make.
Brodie ensures I am supported with whatever I need, allowing me to enjoy special time with Layla. These days out also give Layla the chance to be like any other child, reducing isolation and helping her to develop.
One of my favourite times was a family day out, hosted by Rainbow Trust, to the beach in Fleetwood. Special beach wheelchairs were available so Layla could comfortably get involved, spend time on the beach and feel the sand.
While there we did crafts and Brodie helped us to create a special memento - handprints and footprints on pebbles.
We also got to meet other families with a seriously ill child and chat to them. It was nice to be in that supportive environment. Layla loved the day, it was so special to both me and her. I would never have been able to do so many things and make all these precious memories without Brodie.
Any support I need, Brodie has always been there. Rainbow Trust has done so much for me, my family and Layla. Brodie has helped me through a lot.
Four years ago, after 17 minutes changed my family’s life forever, Brodie stepped in to ensure we didn’t have to struggle alone.
Thank you for your time.
Clara, Mum to Layla
There are so many families like Layla's, that may be feeling so helplessly alone and desperate, who need this specialist support. Please donate today to help us support more families like Layla's.
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