A Life-limiting Diagnosis

Zoë’s Place are the only baby specific hospices in the United Kingdom. They provide palliative, respite, and end of life care to babies and infants from 0-5 years of age with life-limiting or life-threatening illnesses.

We are sharing Elsa’s story, whose families’ lives were turned upside down when their daughter was diagnosed with a life-limiting diagnosis. Zoë’s Place Baby Hospice Coventry provides support for both Elsa and her family.

Life Changing News

“Elsa is two and a half years old. She was born a perfect child. Things were ok, we had no worries, and everything was going fine, as it should be. Then when she was four and a half months old, I was at home on my own with her and she suddenly had a seizure.

I’d pick her up and she would be like a rag doll. She wouldn’t be able to move really. She was that lifeless. And then occasionally some days her eyes were shut, then when she opened them her eyes were rolling in the back of her head, it was absolutely awful.

We thought, this can’t be right? How could she have gone from this perfect child to how she is now?

Our world changed forever when we received the results of genetic testing. They said that she’s got this genetic problem and she won’t be able to do all the things we talked about, and she won’t make it past childhood.

Life with Elsa

There is not a moment when we don’t have her in our sights. It’s difficult to sleep at all because if she does have a period where she sleeps, we must turn her because she’s not capable by herself, so we do that every few hours.

We’re always concerned that every time she shuffles, we’re checking, is it a seizure? Has she pulled her tube out? Is she choking?

I think the hardest thing is coming to terms with the fact that we don’t know how long she’s going to be here for. Knowing that you’re going to attend your own child’s funeral. It is heart breaking.

If we celebrate a birthday or a Christmas we think, is this going to be it? or is this going to happen again? Dealing with that is very difficult. We support each other 100% but I can’t pretend that it’s easy, because it isn’t.

A Lifeline

Elsa was 8 months old, and somebody in her team said that there was an opportunity for her to go to a hospice, and that she would have respite care. At first obviously we hated the word ‘hospice’. You think to yourself ‘absolutely not’. When you hear someone telling you that, that meant you need help with your child, and you think ‘absolutely not’.

But, I agreed to head over there just to talk to everyone and have a look. I was instantly surprised. Everyone was so lovely and so approachable. It’s such a warm happy place. It’s a lifeline.

Even just a couple of nights off, it’s just time to switch off. I think it’s great for Elsa to have a place to go where she’s given this incredible care. Not only are they all medically qualified. They’re just the most caring people. She has the best time there; she gets to do all these activities that otherwise wouldn’t be open to her.

Because they have such impeccable care, it gives you time to rest. Even if its just 24 hours. You can come back 100% and be there for her again. Which is the most important thing.”

Zoë’s Place Baby Hospice

When a child has a life-limiting diagnosis, it is important that families make the most of the precious time they have. At Zoë’s Place they offer all-encompassing support and care; helping their children to enjoy their childhood and giving their parents the time to be parents again.

If you want to find out more about the fantastic work of Zoë’s Place Baby Hospice, head to their website below.

www.zoes-place.org.uk