3-year-old India has partial Edward’s syndrome, a rare chromosome disorder which is the second most common chromosomal disorder after Down’s syndrome. Born with serious breathing difficulties and in hospital for months at a time, India’s health didn’t seem to be improving. Until a miraculous turn of events last winter.
India was unable to breath properly since birth and after a stint in intensive care and numerous tests over four months, the doctors finally discovered India had a completely floppy larynx and needed a tracheostomy.
Supported mum, Suzy said: “The implications of a tracheostomy were daunting, especially when we also had our other daughter, Freya, who was two at the time, to look after as well. But when India’s tracheostomy was fitted, it was amazing. I think of that day like her birthday because she could start breathing properly, and could finally get some rest. They said her sleep study was the worst they’ve ever seen because she was constantly waking herself up to breathe.”
Suzy and her husband, Ben, took India home and felt more positive with the support of five nights of care a week from the council – not knowing they’d be back at the hospital in just a few days.
“We were home for less than a week and she suddenly deteriorated again. Her breathing got worse so we rushed back to the hospital and we just felt desperate at that point. We didn’t know what was going on or why it was happening. She spent another 4 months in intensive care and had to be fully ventilated to get her strength back. Eventually she was weaned off the ventilation and was just using it at night-time, which was when we were allowed home.”
It was at this time that Suzy called Shooting Star Chase. She’d heard about the care the charity offers children with life-limiting conditions through a friend-of-a-friend, whose son went to Christopher’s children’s hospice in Guildford.
“We were utterly exhausted with everything that had happened and all the unknowns. I remember waking up every morning feeling sick, like realising a bad dream was true. I was really depressed. We’d been given quite a bleak outlook by the professionals – they said her tracheostomy was for life and she’ll have trouble walking, and that she’ll always have moderate learning difficulties.”
“One of the nurses, Jacqui, met with us while we were in hospital and talked us through how Shooting Star Chase can help – and it couldn’t have come at a better time. We use short breaks where India stays at the hospice, Hospice at Home where a nurse visits the house to give us a few hours respite, and Ben and I have also had counselling.
“India stays at the hospice 12 nights a year and it’s great because it’s the only opportunity we really get to relax. Similarly, the Hospice at Home care means I can cook, do laundry or just go to the shops on my own, which is blissful. When you have a child with additional needs you have to make sure you look after yourself.
“The counselling Ben and I have had has also really got us through the unbelievably difficult times we’ve had with India’s condition. It felt really good to have an hour each week to talk through things and see things from different perspectives. In extremely stressful situations a relationship can easily break down and we didn’t want that to happen.”
India’s condition continued to fluctuate but she was finally able to cope without night time ventilation in the summer of 2014. Then when Suzy and Ben took India for a check-up in November 2014, they received some shocking news.
“They told us her larynx looks fantastic and while there was a tiny bit of floppiness it was structurally much better. The doctors wanted to take out her tracheostomy and it was such a surprise. They removed it in July 2015 and seeing her breathe on her own was unbelievable.
“India’s condition means that besides the breathing difficulties she had, she’s developmentally delayed. She’s just started walking at three and a half years old and is unable to talk although she does sign to communicate. But she’s progressing all the time and when I think about how far we’ve come and how much India has improved from the really poorly little baby she was, we’re lucky.”
During a rollercoaster three years, Suzy says Christopher’s has been a sanctuary for India:
“Christopher’s has been wonderful. Our family and friends aren’t trained to look after India so the break is priceless – and when she stays there she’s so comfortable she trots down the corridor like its home. She’s so excited to have a little holiday herself where she’ll do all sorts of amazing activities.
“I love the staff – they’re dedicated, enthusiastic and positive – and they completely understand her needs, they completely understand how I like India cared for and they do everything I’d do for her at home. More than that though, I know she’s so loved when she stays there. She gets lots of cuddles and they’ll hold her if she’s upset.
“Shooting Star Chase has been an absolute lifeline to us. They’ve enabled us to function as a family and supported me and Ben in a way that I can’t really describe in words.”
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