By Clara | Mum to Layla
For 17 minutes 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.
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.
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, 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.
I really struggle with getting Layla to hospital appointments as they are often far away and out of town. With so many to attend, travel is a big worry for me, especially as I don’t drive. 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. With Brodie’s support we have been able to attend days out planned and hosted by Rainbow Trust, giving me the opportunity to make memories with Layla that we otherwise would not be able to make.
One of my favourite times was a family day out to the beach. Special beach wheelchairs were available so Layla could comfortably get involved. While there, we also met other families with a seriously ill child and chatted to them. It was nice to be in that supportive environment.
Rainbow Trust has done so much for me, my family and Layla thanks to donations from supporters like you. This support meant we didn’t have to struggle alone. Thank you.
Links:
Project reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.
If you donate to this project or have donated to this project, you can receive an email when this project posts a report. You can also subscribe for reports without donating.
Support this important cause by creating a personalized fundraising page.
Start a Fundraiser
