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Proud parents whose toddler is defying the odds have spoken of the invaluable care and support their family receives from East Anglia’s Children’s Hospices (EACH), at The Treehouse.
Eighteen-month-old Henry Knights has a type of brain injury called Hypoxic-ischemic-encephalopathy (HIE). It followed prolonged complications during birth, during which time he was starved of oxygen.
Henry needed to be resuscitated after being born, and he spent the first week of his life in the Neonatal Intensive Care Unit at Addenbrooke’s Hospital, in Cambridge.
At the time, Henry’s prognosis looked bleak.
Parents Sally and Adam were bracing themselves for the worst. Their little boy was not expected to survive, and Henry was referred to EACH for palliative care.
The family spent three weeks at The Treehouse, celebrating Sally’s first Mother’s Day and the couple’s first wedding anniversary, all while watching Henry grow stronger. He was then allowed home, and now, 18 months on, miraculously, he continues to shine.
Henry has complex needs, including cerebral palsy, epilepsy and developmental delay, meaning milestones such as rolling, crawling and walking are difficult to achieve.
However, Sally describes him as a “wonderful, clever” little boy, who has brought endless joy.
“We’re so proud of him,” she said.
“There aren’t the words to describe our love for him, or how in awe we are every single day.
“He’s such a wonderful, clever little boy, and anyone who meets him can see how special he is.
“He blows us away, and medical professionals are surprised when they meet him. They read his medical records and can’t believe he’s the same person.
“He has complex needs, of course, but he can communicate with us in his own way, and his personality is shining through.”
It’s a far cry from the first few days of Henry’s life, when the situation was “dire”. His brain injury was so severe he was on life-support for seven days.
“We were told he wouldn’t have any quality of life, he wouldn’t be able to feel or show emotion, and he wouldn’t know who we were,” said Sally, who lives in Colchester.
“It was beyond heartbreaking, as first-time parents.
“At seven days, after many discussions with the NICU medical team, we agreed for his breathing tube to be removed, fully expecting him to pass away.
“We’d been told that although the breathing tube might keep him alive longer, he wouldn’t be able to breathe without it. If by some miracle he could, he’d have no quality of life. However, miraculously, that’s exactly what he started doing.
“We waited a few minutes, then a few hours and then a few days. Then, eventually, we were allowed here, to The Treehouse.”
Sally says EACH has become a significant part of Henry’s journey, as well as being an enormous source of comfort and support for her and Adam.
“When he was discharged from hospital, we came here, because nobody thought he was going to live very long,” said Sally, a clinical nurse specialist at Colchester Hospital.
“The lack of oxygen not only damaged Henry’s brain, but his other organs, too.
“If I’m honest, going to the hospice isn’t what we wanted, as parents. I was strongly of the opinion I wanted to take him home, instead.
“However, in such difficult circumstances, everyone here helped us create a bond, and it felt such a safe environment, right from the beginning.
“It was very different to what I expected. It doesn’t feel like a clinical place, with medical professionals.
“It felt more like a second home, and all of the staff, medical professionals or not, have been so wonderful in the way they’ve helped us feel like a family.
“Everyone is so welcoming, and nothing’s ever too much trouble.
“Just coming here for lunch and hydrotherapy may sound a very ordinary, menial thing, but it’s become such an important part of our routine. It means so much and isn’t something I take lightly or for granted.
“Without EACH, the last year and a half would have looked very different, in terms of the way we function as a family, my mental health, and, of course, the hydrotherapy, physiotherapy, music therapy and play therapy Henry enjoys.
“That early intervention, giving him access to such incredible things, has made a real difference in terms of the way he makes sense of the world.”
One of the things Henry finds especially beneficial is hydrotherapy, and he has regular swims with EACH Physiotherapist Lauren Messenger.
The warm water, and state of buoyancy, improves his muscle tone and helps strengthen his limbs and joints.
“Being able to give him to someone like Lauren, who knows immediately how to handle him, means so much to me,” said Sally.
“I worry about Henry, always, but, for those 20 minutes in the pool, I know I don’t need to. I can watch on, perfectly confident he’s comfortable, having a nice time and that he trusts Lauren. It’s clear they’ve built a very special relationship.
“For every other part of his life, I’m at the forefront, because he needs much more care and attention than a typical child. Here, it’s lovely to step back and watch, and it gives me a sense of relaxation, knowing he’s safe and so well looked after.
“Being able to hold him in the water is also very beautiful. I love it, and they’re memories I’ll cherish forever.
“He’s happy and comfortable in the pool, and you can see his instant relief. His high muscle tone causes constant discomfort, so hydrotherapy is something I’m incredibly grateful for.”
Sally is hopeful her son can go on to live a life full of “quality, love and support”.
“With HIE, it’s a case of ‘wait and see’, and no two children will have the same outcome,” she said.
“We don’t know what the future holds and we take it day by day, week by week.
“However, for Henry to be doing what he’s doing is astonishing, and he’s defying the odds.
“We were expecting our little boy to die, and the fact he’s still here with us is astonishing.
“It’s incredible, and we’re now having conversations with the medical team about him going to school one day. I wish I could give my past self a glimpse of our current life, to know that everything will be okay.
“We’ve gone from thinking Henry isn’t going to live very long to seeing a future full of quality, love and support.
“Obviously, no-one thinks this will happen to them, that their baby will be born so poorly and the consequences will be life-long. However, disability is a part of life and it’s the reality of our family.
“We couldn’t wish for better support than we get at The Treehouse. What’s really comforting is knowing the care team are going to be there for Henry for his entire life. It’s a very special place and somewhere we’re eternally grateful for.”