In today’s busy world, would you please spare 17 minutes?
That’s how long my newborn daughter, Layla, needed resuscitation after she was born six weeks early and had a cardiac arrest.
For 17 agonising minutes, I thought she was going to die. My tiny baby girl was fighting for her life and I could do nothing.
My only hope were machines and procedures that I had no control over.
For 17 minutes, everything stopped.
During those 17 minutes, Layla suffered a lack of oxygen that caused 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 the everyday life we once took for granted vanished in an instant.
Layla also has cerebral palsy, epilepsy and microcephaly, a condition that causes a baby’s head to be smaller than expected.
She suffers from daily seizures.
Alongside this, Layla is registered blind, has heart murmurs, is tube fed and was admitted into hospital every month when she was a baby because of urinary tract infections caused by kidney failure.
With help from my partner Anthony we care for Layla round-the-clock. I had to give up work to care for her.
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.
We were referred to Rainbow Trust by the NICU when Layla was six months old.
Without Rainbow Trust I wouldn’t be in the place I am now.
When Layla first came out of the hospital it was an incredibly tough time and Family Support Worker Brodie’s help gave us 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.
I really struggle with 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. Due to Layla’s complex needs, she receives care from four different hospitals meaning travel can be long and appointments become overwhelming.
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 about travelling, allowing me to focus on Layla and her needs.
These journeys also give me a chance to talk. Just having that time to chat and offload makes all the difference.
Brodie comes into the hospital with me and attends the appointments to ensure I 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.
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, focusing 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 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, Brodie helped us to create a special memento: hand- and footprints on pebbles. We also met other families with a seriously ill child and chatted 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.
If you can, please donate today to help more families like mine receive the essential and amazing support Rainbow Trust provides.
