Ivy's Story

Emily and her partner Alex are from Trewoon in Cornwall, and their first-born daughter Ivy is 4 years old. 

Emily tells us her story, and explains how Little Harbour has been there for her family in so many ways: 

“I had a normal pregnancy with Ivy, and everything was really healthy, apart from some pre-eclampsia right at the end. She was born and everyone was happy with her, so we took her home.

“At home we started to notice a few things, she wasn’t latching or feeding very well. She’d go quite cold, as she couldn’t regulate her temperature. We knew something was going on.” 

Ivy was in and out of hospital for the first weeks of her life. She was put on IV antibiotics, as it was assumed she had an infection. But these medications did not seem to be working, as Ivy was not thriving or developing in ways she should be.

At 2 months old Ivy underwent some tests, one of Ivy’s doctors had a lot of experience with metabolic diseases, and he had began to recognise the signs Ivy was showing.
“He went off and did lots of phone calls and that’s when we knew something was definitely going on”, said Emily.

Ivy had an MRI scan of her brain, which highlighted that it was probable that 3 month old Ivy had a condition called Pyruvate dehydrogenase deficiency (PDH). Following some genetic testing her diagnosis was confirmed.

“We of course went straight on Google as soon as they told us, and we saw it was life-limiting and not something that goes away”, said Emily.

“Ivy is our first child, and I think that’s why we didn’t notice anything at first because we were thrown into it, and we thought she was developing fine. It was only when the doctors said, she’s not.”

“We were almost relieved about in a way because we just wanted to know what it was”, said Emily.

We had already been told because of the structure of her brain; whatever it is it is life-limiting. We had already been told the bad news, we just wanted to know now, not how to treat it, but how to keep her going as long as possible.

Emily and Alex joined a support group and leaned on The Freya Foundation to learn more about Ivy’s condition. 

Emily said: “It was just learning, not only how to be new parents and to look after a baby the general way, but then all the added extras as well of all the NG tubes and the medications.

“She went on the ketogenic diet which really helped, and once we got our heads around it, it all sort of came together then and it just felt normal to us. We just cared for her as a normal baby, but with all these added extras.”

The family have been receiving support from Little Harbour since Ivy was a small baby. 

Emily said: “It’s been amazing, I don’t know how we would’ve got through this without Little Harbour.”

Emily and Alex were quite nervous when they heard the words ‘children’s hospice’. They assumed it was going to be all doom and gloom, and they didn’t want to be reminded that their daughter was going to die.

But we started coming and now it feels like coming to a family home, like going over to your aunt’s or your uncle’s

“Although it is about the end of life, that’s very much kept separate. It’s about having other parents there who understand, and watching siblings run around.

“Because it’s hard for the siblings as well, and it’s nice to see them have a place where they can be safe and be able to speak about it. 

“It is hard to talk about, and people don’t always know how to take it. Before having Ivy if someone told me that their child was really poorly, I wouldn’t have known what to say. Whereas here you can just come and speak to any parent and everyone is really open.”

Emily knows that her daughter is safe when she is at Little Harbour.

“They know how to deal with NG tubes and all the medical stuff, it’s just a place where you can come and be really open”, said Emily.

“Our whole life does seem to be around this very strict routine of medication and feeds and hospital and physio appointments, we try to not make it about that, but it is really.

“So when we come here we can hand all of the medical stuff over to the Care Team. When we come down and see Ivy in the mornings, we can just give her a kiss and a cuddle and enjoy some quality time. And we feel like we can enjoy her more as we don’t have to think about whether she has had her meds, or what her temperature is like today. We know the Care Team have done all of that, so we can have quality time with her, just as her.””

Little Harbour gives Emily and Alex time to be a couple again, and they can be reassured their daughter is completely safe and happy. 

Little Harbour holds monthly sessions for babies, younger children and their parents, called ‘Harbour Tots’. While the children enjoy sensory activities it is also an opportunity for parents to engage in conversations with those in similar circumstances, with no judgement. Emily takes Ivy to ‘Harbour Tots’, and they both thoroughly enjoy the sessions.

“I love Harbour Tots. You go to other toddler groups, and it can be a little bit overwhelming, as you see the other kids running around, playing and interacting with each other, and you feel very left out sometimes as it highlights even more that your child is not the same as the other children. Whereas when I come here for ‘Harbour Tots’, the children, although they’re all different, have similar needs, and I don’t feel like Ivy is being left out.

“As everything is prepared for children that can’t move around as much, and have these needs, I feel like Ivy gets the most out of it, as it is very sensory based.

She doesn’t stop smiling the whole time.

The team at Little Harbour stop at nothing to make things accessible for children like Ivy. They will never say there is something she cannot do. If Ivy cannot play a musical instrument, they will play it for her or put it on her hands so she can feel the vibrations. Everything is catered towards children like Ivy, so they do not miss out on anything.

“She never sits back and has to watch it happening, she is always involved, and that is a really important part. We only get that here”, said Emily.

Emily is expecting a baby in May. 

“Without Little Harbour, we would be dreading it”, said Emily.

“But knowing the amount of support that we get from here, has taken a massive weight off our shoulders. 

“And the sibling support that they do here as well, that has been on our minds. 

“Hopefully this baby is healthy, and we don’t want this one to feel like a glass child, like they’re pushed to the side because Ivy has so many needs. 

“I think here they teach you how to not do that, and they put a lot of emphasis on giving the siblings a lot of attention when they come in and making them feel special. That’s taken a weight off our shoulders.”