“We were expecting our little boy to die”: the toddler who is defying all odds

Eighteen-month-old Henry Knights has a type of brain injury called Hypoxic-ischemic-encephalopathy (HIE). It’s caused by 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, the outlook for Henry 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.

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.

“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 described as “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 heart-breaking, 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 that 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.

“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,” said Sally.

“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.”

“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.”
 

“With HIE, it’s a case of ‘wait and see’, and no two children will have the same outcome,” Sally 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 incredible.

“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.”

Thank you to Sally and Adam for sharing Henry’s story.