On 10 August 2022, we received a phone call from nursery that Millie, our gorgeous, chatty, energetic three-year-old, had fallen suddenly after standing up from her chair. An initial check from the GP suggested it was a small fainting spell and we were advised to keep an eye on her over the next day.
The following morning it became clear that there was something seriously wrong. Millie was stumbling when she walked and was forgetting words and unable to form sentences. My husband and I saw the signs of a stroke but thought it couldn’t be that as we had never heard of children suffering from a stroke.
Millie’s diagnosis
We rushed her to hospital, where a CT scan confirmed our worst fears – Millie had indeed suffered a stroke and needed emergency surgery to try to clear the blocked artery in her brain. Millie spent the night in the Paediatric Intensive Care Unit (PICU) and seemed stable, but the swelling in her brain worsened. We had no choice but to allow the surgeons to perform an emergency craniectomy to remove a large section of her skull to relieve the pressure.
The next week or so in PICU were the worst of our lives as Millie was kept in an induced coma to let her brain recover from the surgery. We were told that there was profound damage to the left side of her brain and only time would tell how badly she would be affected.
Once Millie came off the ventilator she was moved down to the children’s ward where we spent the next seven weeks. It was a really difficult time, trying to juggle our time between Millie and her brothers. Her twin brother George found it particularly hard as he had never spent more than an hour away from his sister, let alone several weeks. It was so hard for us all, but Millie’s strength and determination kept us all going.
Our journey to The Children’s Trust
We first heard about The Children’s Trust when a nurse in PICU mentioned that she had known a child with a similar brain injury go there. Anyone who mentioned The Children’s Trust talked with such warmth and positivity that we knew it was an avenue worth exploring!
When Millie was stronger, the prospect of her going to The Children’s Trust for a period of rehabilitation became a real possibility. I was nervous as it would mean leaving my husband and two boys behind for 12 weeks. However, having heard so many incredible things about the rehabilitation there, we knew we needed to do whatever it took to give Millie the best chance to relearn the skills she had lost.
We went straight from hospital to The Children’s Trust. We instantly felt welcome and part of something special. I was terrified of leaving hospital, as only weeks previously Millie had been so unwell. But the staff at The Children’s Trust made us feel so at ease and I knew that Millie would be very well looked after.
Specialist rehabilitation
During our stay at The Children’s Trust, Millie had daily physiotherapy, occupational therapy, speech and language therapy and school sessions. She also enjoyed weekly music therapy and hydrotherapy, as well as time with the incredible health play specialist and educational psychologist.
Millie is a very determined girl, who knows what she wants, and indeed what she doesn’t want. The therapists worked hard to tailor sessions to Millie’s needs so that she could flourish whilst also enjoying her time at The Children’s Trust. Millie quickly felt comfortable with the therapists which allowed for some fun and memorable sessions. Millie could often be seen taking her ‘baby’ for a walk during physiotherapy, and dramatically acting out different scenarios. One of Millie’s favourite sessions was rocking out with staff during her music therapy sessions!
Millie’s stay at The Children’s Trust
Millie’s placement at The Children’s Trust lasted 16 weeks. During that time the care staff were always there, helping with anything we needed and looking after me as much as they did Millie. The other families were also an incredible support to each other.
Considering what we had all been through, it felt an incredibly positive place most of the time and we have made friends who we will keep for life having gone through this journey together. I know I would not have made it through the placement had it not been for the amazing support from the care staff and the other families staying at the time.
Making progress
When we arrived at The Children’s Trust, Millie could sit up with support and was making very few sounds. Through her determination, and the incredible patience and expertise of the therapists, Millie has made amazing progress! She is now walking with the support of ankle foot orthosis (AFO) and walking aids, and is talking all the time.
Magic moments
Hearing Millie say her first few words again and seeing her take steps are the most special memories for me. Millie saying ‘Mummy’ and ‘Daddy’ again were truly special moments, and we will be forever grateful to the ever-patient speech and language therapist for her support.
We have so many fond memories of our time at The Children’s Trust; from glitter-filled occupational therapy sessions and messy food play to the Christmas performance that the children participated in. Millie also enjoyed physiotherapy sessions in the soft playroom, and the staff appealing to Millie’s dramatic side in order to get her to do the exercises she needed to without her realising!
I stayed with Millie throughout her placement, and my husband and sons were able to come and stay in the parent accommodation at the weekends. This was invaluable to us as it allowed us to be together as a family. George, Millie’s twin brother, was always made to feel so welcome by the care staff and he was able to join in with activities so that he could enjoy his time with Millie.
Going home
The transition to care at home felt seamless, as the therapists were in contact with the community support team. Everything was set up ready for us when we got home – another invaluable help to us.
The teachers at The Children’s Trust also helped us put together the Education, Health and Care plan (EHCP) for Millie. I was so grateful for their expertise, as this was a difficult task during an already very stressful time.
The future
Millie continues to flourish at home and is making progress every day. We still don’t know what the future holds, but we know that The Children’s Trust gave her the best start to her rehabilitation.
