Why not read some of our stories below:
Millie - Mai
Written by Aimee, Millie's mum.
Millie was my ‘Perfect Pregnancy’, I never had any problems whilst carrying her except I was very low on iron so had to have regular Intravenous (IV) iron treatments.
Our beautiful, healthy girl Millie-Mai was born on 2nd June 2006 at 4.32pm, 17 days early.
After an hours labour Millie was born but was not breathing, and needed ‘a little help’ before she was taken to the Neonatal Unit. I was not to worry though as I was told, “she has just swallowed some mucus which is common in babies” I got some sleep before the staff from the neonatal unit came to see me. They said Millie had started having abnormal movements and the needed to do some tests and investigations. We then went to see our beautiful girl; she was stunning, everything I imagined and more!
When we went to see her Millie-Mai was hooked up to so many machines, she weighed 5lb 14oz and I remember looking around noticing she was the biggest baby in there at the time; I couldn’t understand why she needed so much help.
Doctors ran so many tests, investigations, lumbar punctures, biopsy’s and MRI’s, everything came back clear and Millie had everyone on their toes already! Her doctors were truly baffled.
Getting home our baby was everything to me, but that was not easy.
Millie – Mai was diagnosed with epilepsy and would need medication all her life so we had to be trained to administer these and the rescue medication too in case of an emergency.
Millie couldn’t suck or swallow which meant I had to learn how to tube feed her. When children and adults have no suck or swallow reflex this means that their secretions ‘pool’ and have to be cleared by using a suction machine so I had to learn how to do this too.
All along, I didn’t get it. How could she be so poorly yet look so perfect?
Adjusting to Millie’s world was so hard, exhausting, draining and very overwhelming. It was only when one of Millie’s nurses suggested Zoë’s Place and the suggestion of some support that we reached out for help.
I had heard of Zoë’s and knew it was for poorly babies but thought surely Millie wouldn’t need to access their services? Her nurse made us an appointment to have a look around and in all honesty, I dreaded it. I remember the first time I went to Zoë’s Place; I got a warm homely feeling. I felt as though a massive weight had been lifted off my shoulders. After meeting the nurses and looking around we decided to give Zoë’s Place a go for a few hours so that I could catch up with the housework and more importantly get to spend some time with Millie’s siblings James and Ebonie.
Millie loved it at Zoë’s Place and I was loving being able to start to relax. After a few weeks Millie was invited for her first sleep over, something I was once again dreading. Seeing Millie so happy when she was there made all my worries disappear.
Zoë’s Place were brilliant; we felt and still do feel so lucky to have been able to access their services. James and Ebonie started looking forward to ‘Normal’ family days out, something we knew we could do knowing that our girl was getting the best care there was.
As time went on a specialist eventually told us that Millie had been starved of oxygen at birth and would be severely disabled for all of her short life. As Millie grew so did her needs and as everyone knows, we lost our beautiful girl in 2019 to pneumonia and other complications of her condition.
As much as it came as a shock, deep down we knew Millie was only every ‘Borrowed’ to us, we just never imagined having to say goodbye to her at just 12 years old.
I’ll never be able to thank Zoë’s Place enough for making every moment count, they made her so happy and I’ll be forever in debt to them for being there for us; through the hard times when Millie was born, and for the even harder days when Millie was Dying. I still see the bereavement team who have supported me through these times and for them I am also grateful.
I can’t help but smile when I visit Zoë’s Place because I know Millie made some of the best memories there. The love, care and support they give is second-to-none. Zoë’s Place will forever own a piece of my heart.
A nurse at Durham Hospital introduced Dale and Beth Newton to Zoë’s Place when their Son Sonny was admitted with a rare genetic and neurological condition called GM1 Gangliosidosis.
Shortly after admission Dale & Beth received the devastating news that Sonny’s life expectancy would be 2 to 4 years and after many hospital admissions, they were introduced to Zoë’s Place.
For Sonny’s parents the thought of going into a baby hospice was incredibly daunting but on arriving for the first time, they said they could not have been made to feel any more at ease. They said, “The setting was beautiful, fully equipped to meet the needs of every child and looked exactly like a nursery. You could see the place was full of love and laughter. The staff were so welcoming, showing us around each room taking a great interest in Sonny and what he liked and disliked”.
“We started to receive counselling through Zoë’s and Sonny was looked after in the hospice while we had this. I felt scared and nervous taking Sonny for his first session, worrying about how he would be and if they wold know what he needed.”
Because of Sonny’s complex needs and condition, he had never been left with care providers before; only briefly, with close family and friends so like so many of our families this was a big step for both parents. Beth said, “The staff were amazing and made me feel so relaxed. I could see they truly cared for him and enjoyed having him in their care. I would arrive back for my counselling session to find he’d slept in their arms or he was having fun in the sensory room, had made pictures to bring home etc.”
For Dale, Beth and their family some of their darkest days were spent here at Zoë’s Place yet the care and support that they received during their time here was a lifeline. The family said, “Ashleigh and the nursing team went above and beyond, nothing was too much for them they are truly amazing and we honestly can’t thank the staff enough. Zoë’s is a place where we will be entirely grateful to for their support, still to this day that support is there “
Emily's parent's said:
''Emily was born on 14.10.2014 with a normal delivery and we had no idea Emily had anything wrong. She appeared as healthy as any other child when born and we went home in less than 24 hours and carried on as normal.
When Emily was just 1.5 weeks old she started to go blue around her mouth when being fed but once she was sat up and her back patted she would be fine. Hospital was informed yet we all thought it was reflux.
A week later she then did it when she wasn't being fed and her eyes were fixed and she was going blue. We rushed her to hospital where she was rushed off, put on oxygen and went for a CT and MRI scan. We were then informed that her brain was not fully formed, both hemispheres were underdeveloped and her corpus collosum was missing.
The doctors were unsure why or if there was a diagnosis other than epilepsy. She started anti epileptic drugs immediately. At 4 month old Emily started to have treatment for infantile spasms on top of her epilepsy then had an eye test which showed she had Chorioretinal Lacunae which are holes in the back of her eyes.
With all of these Emily was diagnosed with Aicardi Syndrome, a rare life limiting condition, only 4000 girls are known to have this worldwide and 1 boy.
Due to her syndrome, Emily requires a lot of help and care. Emily is registered as blind, she is unable to walk and talk and has no head or trunkal support. She is fully tube fed and is unable to have anything by mouth. She also has uncontrollable epilepsy and seizures on average 20x daily but with 24/7 constant background epilepsy.
Emily struggles to communicate, play or grasp toys and objects. We have been told by doctors that they will do their very best to get her to her teenage years. On top of all of this Emily is a strong, beautiful girl who has anyone who meets her fall in love with her.
We were told about Zoe's Place from around the same time as her diagnosis but we refused to accept any form of help, as to us Emily was no different to any other newborn who would keep us busy and tired, so we didn't see why we needed anymore help than any other parent.
When Emily was 9 month old we were asked again and accepted to look around with the expectation that we would not like it and refuse it, however we loved the look of it, it was so homely and warming and everyone seemed welcoming. All the children there seemed happy and content. We agreed to let her go for a few hours.
We missed her but seeing just how contented she was we then agreed at a later date to an overnight stay. Again Emily was comfortable and happy and we were too as we were able to come and go as we pleased and were able to call at any point in that 24 hour period no matter what the time.
Sleepovers increased and now Emily attends 2 nights per week. She settles really well there and you can see she is as comfortable in Zoes Place as she is at home. Her sister sleeps at her Nana's regularly and Emily has hers at Zoes Place, its a home from home. While Emily is in respite she gets pampered, she has her Jacuzzi bath with music and lights, she has aromatherapy massages, she is included in music, stories, days out and arts and crafts.
She gets everything she needs all round. When she is in respite we get to sleep longer and earlier, we get to catch up on housework, shopping and have the ability to take Emily's 8 year old sister to places we are unable to take her to when Emily is home due to either issues with seizure triggers or due to places not being disabled friendly.
Zoe's Place also includes the whole family with days out, nights out and sibling treats so all round it not only takes care of Emily but for us all too and we will be sad when it is all over in less than 2 years, there wont be a place out there that will offer the same help that Zoe's Place does.
Jorge is 2 years old and he started to come and stay with us when he was a few months old. He has been diagnosed with cerebral palsy and epilepsy meaning he is totally dependent on the nursing team to care for him throughout the day. He has developmental delays, some visual impairment and he requires feeding through a special tube inserted in his tummy.
Jorge visits the hospice every week and he loves sensory play, messy play, touch and listening to singing. He has regular physiotherapy to help him with his development. He loves cuddles! Whenever he is staying with us he always lets us know he is happy with his gorgeous smile!
When I asked his parents what Zoë’s Place means to them they replied as follows:
“Zoë’s place has really been a god send to both Jorge and us as a family. The staff are amazing with Jorge, and he gives plenty smiles away when he's there which says it all and makes the difference for us knowing he's in such good hands. The support Zoes provide is first class, their main focus is on the children to ensure they are comfortable and happy. They are always reliable which means we have chance to recharge and take a step back for a short while as Jorge needs 24/7 care and support. We really couldn't do without Zoes place. Thank you so much! Xx”
Connie is four years old. She was born 14 weeks early and spent time in the neonatal unit. She has a hearing and visual impairments and she is developmentally delayed. She has a cleft palate meaning she is unable to feed orally therefore she has a gastrostomy fitted so that she can be fed through this. She suffers from sleep apnoea so she needs to be supervised throughout the night.
When Connie comes to the hospice we know she loves lights, all kinds of lights!
She enjoys playing peek a boo with her blanket and loves cuddles. She likes to shout and make a noise with her toys which means she is not often quiet!! She doesn’t like people to put things into her hands as she likes to take her time and pick them up herself.
She loves bath time and splashing around. Connie is a very happy little girl who does not cry very often.
This is what Connie’s mum told us when she was asked ‘What does Zoë’s Place give to you’?.....….
“It doesn’t feel like I am leaving Connie with strangers as Zoë’s Place feels like an extended family to me. It is a place where we can leave Connie to have fun with her friends. It allows us to spend some quality time with our other children whilst not sacrificing her happiness at all. I never worry about leaving Connie with the team at Zoë’s Place.”
Charlie is 3 years old. He attends the hospice two nights per week.
Charlie was born with congenital heart disease. He had bilateral cerebral infarctions whilst in hospital and he has developmental delays. He needs to be fed through his gastrostomy tube. He has postural scoliosis and needs to have daily physiotherapy to help with his muscle tone and to help him move positions.
Charlie enjoys sensory play with music and feeling different textures. He loves ‘tummy time’ laying across a wedge and listening to music. He loves cuddles and being talked to during the day.
We encourage Charlie to spend time sitting in his special chair with toys and different textures placed in front of him.
This is what Charlie’s mum told us when she was asked ‘What does Zoë’s Place give to you’?.....….
"It gives us chance to have some normality as Charlie has so many special needs most of our time is spent caring for him. It allows us to catch up on well needed sleep and to enjoy time together with other family members.
We know that Zoë’s Place has helped Charlie with his developmental progress and we feel confident that the team provide Charlie with lots of wonderful care and attention.
Zoë’s Place embraces my whole family and cares for us in lots of ways. We enjoy attending the parents group and the support we get from all the team."