This is Alessi’s story, told by Mum, Reagan:
Me and my family are pushed to our limits every day. Jessie May can’t be pushed to theirs.
My baby girl, Alessi, was born at 6lbs 6oz during the height of the COVID pandemic. I’d had a straightforward pregnancy and we were looking forward to welcoming our new bouncing baby to our family. But, the labour was far from straightforward, things went from 0 to 100 in seconds. Alessi’s heartbeat dropped, and then stopped. Thankfully due to things moving so quickly, Mitch was still there, otherwise I would have been alone because of COVID restrictions. They needed to get Alessi out fast, but again because of COVID it took some time for the surgery to start due to the requirement of PPE. I was still awake at this point just praying that they’d get her out soon and that she’d be okay.
She spent 35 minutes in resuscitation, her brain had been severely starved of oxygen, and we were then given the news no mum or dad ever wants to hear: our daughter was very poorly and was unlikely to live for very long. In fact they said they’d be surprised if she’d make it past the first day.
I’d only just woken up, I still couldn’t even open my eyes properly. I’m not sure if I even took this news in. I was completely in shock and Mitch had to spend 4 hours on his own while I recovered from surgery and they worked with Alessi.
I spent the next 2 weeks in hospital, which was completely overwhelming. I wasn’t allowed to hold my baby and I couldn’t have any visitors because of COVID. It was lonely, and dull, and scary, and isolating.
Alessi finally breathed on her own after 2 weeks but that’s when it became apparent that she had no swallow which created enormous breathing difficulties. She was diagnosed with severe Cerebral Palsy. She would never talk and she had no mobility – only with her eyes and her head a little bit.
She was in the NICU for 10 weeks and then allowed home; because of COVID this was the first time that Iyla was able to meet her little sister – a long time for any excited sibling! It was at this point that I met the Jessie May nurses for the first time. They came in to help with the transition to home because, amongst other things, Alessi was having frequent seizures on a daily basis, up to 40 in 20 minutes was not unusual.
I first met Jessie May over Zoom as we couldn’t meet face to face due to the ongoing COVID restrictions. I didn’t know what having a life limited child meant at the time and I was really wary of people coming into my home and looking after my daughter. I just wanted to be able to look after her myself.
But we were eventually able to meet in person and after the first visit with Alessi I could see straight away that having Jessie May support was going to be a good thing.
But Alessi was only home for 2 days and then she was back into the children’s unit. She was there for 6 weeks but came home in time to have her first Christmas at home with us with palliative care and support – she really wasn’t expected to last very long at all at all.
We were really conscious that we wanted this to be a happy time with our new baby and her big sister Iyla, we were a family of 4 at Christmas for the first time – but all we felt was numb. We could lose Alessi at any time.
Somehow we adapted, and our situation became the “new normal” (a sentence we’re all familiar with now), but Alessi went from bad to worse while she was home at Christmas. She was going blue up to 10 times a day and her oxygen sats kept dropping. So a couple of days into the new year she was back in the children’s unit where it was decided that she would need a tracheostomy to help with her breathing.
Due to COVID, only one parent at a time was able to stay with Alessi, so Mitch was juggling work and being with Alessi, looking after Iyla and spending time with, and supporting, me. I still don’t know how he managed it. I can’t imagine how unbelievably hard that must have been for him.
Meanwhile I was battling with receiving palliative care support at Alessi’s bedside and having to make very hard decisions about Alessi’s care without Mitch by my side. Knowing how serious the tracheostomy would be for Alessi, I had to do the “wishes document” (like deciding on medical intervention etc) for Alessi on my own. Such a terrifying, lonely experience. And at the same time I wasn’t allowed to stay in hospital with her – due to COVID I actually had to book appointments to see my own daughter!
At this time, when we needed to be more than ever, we were unable to be a family, to be united during the difficult decision making.
Thankfully, Jessie May were in our lives. If I needed someone, they could be there because they’re nurses they were allowed to be there with me.
After Alessi’s tracheostomy, Mitch and I fast tracked the training to be able to care for her so that we could bring her home as soon as possible. I was just desperate to be a mum, capable of caring for my daughter.
Alessi is now 9 months old, and life is far from normal. She can still have up to 20 seizures a night, which is terrifying, she is frequently in and out of hospital because her condition means she can pick up viruses very easily – meaning the time during COVID has been particularly scary.
She is on a suction machine constantly, is fed through an NG tube in her nose and is on a sats machine to monitor her oxygen throughout the night. She basically needs round the clock care, we sleep in shifts throughout the night because she needs constant monitoring due to her seizures and suction machine requirements.
And after a year in and out of lockdown, and Alessi in and out of hospital, cut off from our support networks, we feel pushed to our limits. Some days we don’t know how we can go any longer. But Jessie May is there.
There’s no one else in our family bar Mitch and I who can care for Alessi, who can relieve us, but Jessie May are trained professionals and I know Alessi is safe when she is with them.
If I need someone, they’re there. Helping us rebuild from the trauma of Alessi’s birth and diagnosis. Without them, life would be very different. They even still surprise me with how supportive they are, simply by sending a little text message of support when they know I’m in hospital with Alessi, or a visit for half hour at her bedside. It means the world.
More and more children are being diagnosed with serious illnesses – putting more and more pressure on hospice services like theirs. If they are to help every family like mine who needs them, they cannot be pushed to their limits. That’s why I hope you will support them and us this Children’s Hospice Week, by making a donation or by pushing yourself to your limits and taking part in a fundraising challenge.
Children’s Hospice Week takes place between Monday 21st – Sunday 27th June this year. The week celebrates the 54 children’s hospices that cover the UK, raising much-needed awareness and funds to ensure that the services aren’t ‘Pushed to the Limits’.