Arriving at the Berenblut family home in Edgware, I’m greeted enthusiastically by their youngest children who tell me their expectations of this article. “It needs to be funny,” says Ami (7). “But also emotional,” adds Rafi (9), “So that people will donate lots of money.” I promise to do my best. Matty (14) wanders in, grazing on nosh. Yael (16) curls up with their dog, Scout, and shares memories. Rafi and Ami punctuate the conversation with facts about the Incredible Hulk.

I sit with their parents, Marcel and Ruth, by window sills covered with photos chronicling the 142 days of their youngest child, Donnie; a life well lived and full of love. The photos are familiar to me, as they are to all of the Berenbluts’ friends and family. We shared this journey via WhatsApp messages from the week before Donnie was born until the week after his shivah. I will never forget the summer of Donnie and the updates from Ruth and Marcel detailing their creation of family life on a neonatal intensive care unit.

Donnie was born with Edwards Syndrome, also known as Trisomy 18, a chromosomal disorder with a poor prognosis and little life expectancy. After a scan, the neonatologist told the couple that if he survived birth their baby might live for a few months before quietly slipping away. Give him love, keep him warm, dry, fed and clean. “I thought, we can do this,” says Ruth, “We can get through this as a family.” Marcel adds, “We knew we could fill his life with love, that wasn’t a question.”

The expectation was for Donnie to have surgery at Great Ormond Street Hospital shortly after his birth at University College Hospital, possibly enabling him to come home. It became apparent that his heart could not withstand this procedure. A new strategy was needed.

“We landed on the Neonatal Intensive Care Unit knowing he would die but not when or how. You become the dedicated observer of your baby”.

Donnie needed constant specialist care, beyond that which a children’s hospice could provide. Despite his prognosis, the NICU team continued to assess and reassess his needs. Supported by Rabbi Dr Akiva Tatz, world-renowned expert in medical ethics, the collaboration between family and medical staff meant Donnie was always considered a patient. Even when options are limited, there are options. Even a neutral position is a life or death decision. The generosity and professionalism of the staff evolved a treatment plan to last until it was no longer viable.

Marcel and Ruth developed a routine providing as normal a family life as possible, taking turns with the school run. Every afternoon the children came to UCH to play with Donnie, do homework, eat dinner. One nurse commented that she was “determined to get this baby around the block in a buggy sometime”. This seemed a ludicrous idea; he was on oxygen, fed intravenously, attached to a monitor, and needed his line flushed every 15 minutes. It was a crazy suggestion but Ruth and Marcel loved the way that this nurse thought of Donnie “as a person”.

Then he was moved to a different room without natural light or windows. After a few days, Ruth found the nurse and asked, “How can we make this happen?” The unit needs to be risk averse; it’s a controlled environment. They drew on the expertise of the Palliative Care unit, which aims to help a patient live despite their life-limiting condition.

It was the nurse’s vision to get Donnie out but Ruth’s drive that took it forward, plus the creative and technical support of the neonatal team. They experimented with walking him around the hospital. At a window, the nurse suggested taking a photo of Donnie with London buses so people can see where he lives. The next step was to find a way to take Donnie outside, even though his team had never known an intensive care baby do this before.

They virtually turned his buggy into a mobile intensive care unit, allowing Ruth to manage Donnie’s care needs outside the unit, weaning him onto less oxygen, making him portable. They gave her confidence and support, everyone understanding this was good for Donnie but knowing it was all too possible that he could die on an outing.

And so began Donnie’s summer. Family picnics, fruit picking, local parks. Feeling the wind in his hair and the sun on his face , the rocking sensation of the river bus, cobblestones beneath his wheels, hearing the piano in King’s Cross station, seeing the views from Dunstable Downs. On his 100th day he visited home where he smelled pizza and listened to Matty playing guitar.

Donnie responded to stimuli and displayed contentment around the people who cared for him. Outdoors his colour would be pinker, he became more alert when awake and more restful when asleep. On borrowed time, Marcel and Ruth were cramming a lifetime of love and memories into every second.

In Donnie’s 19th week it became impossible to feed him any longer. On September the eighth last year, after an outing to Regents Park, Donnie peacefully passed away. His siblings had the opportunity to hold him afterwards (Ami interrupts, “I wanted to cuddle Donnie, brothers and sisters should —it’s important for children to know what death looks like”). The shivah brought love from friends, family and even strangers.

So how do they feel now? The children insist that they love talking about Donnie. Ruth says “Suddenly it’s a year. I survived my child dying in my arms and 12 months of the loneliest, rawest grief.

“We’ve done one of everything, each birthday, each anniversary. Summer will always be hard but surrounded by happy memories. We feel immense sadness at his loss but comforted knowing he was loved and part of our family. Gratitude to all who continue to accompany us on this hardest of journeys.

“Donnie had the best life possible, thanks to our collaborative partnership with staff , based on mutual respect. In the year that the NHS is 70, we celebrate how over 100 professionals came together to care for one baby, creating the most wonderful outcomes for that patient. There was constant dialogue. They always did the most. They never made us feel like we were wasting resources.”

The best best coping mechanism, she says, was to find meaning. They set up a fund in his name; Donnie’s Fund. “There’s comfort in witnessing the kindness of every donor; because Donnie lived, the kindness in the world increased. We are keeping Donnie’s memory alive and making a difference to other families. ”

Having a newborn in the NICU is physically and emotionally exhausting. As soon as you leave you want to be back with your baby. You phone when you get home and when you “wake up” (sleep is unlikely). Yet you don’t want to annoy staff or pull them away from life-saving duties. Leaving your sick baby in the care of strangers, placing your trust in them, is challenging.

The speed at which babies in NICU can decline causes enormous stress and uncertainty. “He often went from “fine for Donnie” to critical in a split second.

“Once, we were sitting by his cot when he suddenly stopped breathing. The consultant jumped into action, soon Donnie was back to…being Donnie. Weeks later, this happened 31 times in 5.5 hours. He then lived another seven weeks. You couldn’t leave him stable and feel sure he would remain that way.”

An initial project of Donnie’s Fund is to provide hospital safe, restricted access webcams, allowing families to see their sick baby whenever they cannot be physically present. This facility already exists in some hospitals in the USA but the family believe that there are none in the UK as yet. These provide reassurance, help with bonding especially for breastfeeding mums, and to some extent help alleviate the Post Traumatic Stress Disorder that families can often experience.

They plan to provide emergency packs for families finding themselves unexpectedly on the NICU and as accommodation is limited at UCH, they hope to fund living space for families needing to remain close by.

The financial implications of having a baby on the NICU for an extended period are huge, especially for single parents, the self-employed or those living far from the hospital. They intend to offer vouchers to those experiencing hardship.

Following bake sales, haircuts and football marathons, the next big event is the Royal Parks half marathon in which they have 15 runners including Ruth — extra special as it travels through Donnie’s favourite spots in London. You can support her here.

The Berenbluts also aim to sponsor a conference on medical ethics, as their unique approach launched new discussions. One consultant commented that until Donnie, conversations only dealt with burden of care. No one knew that a baby in his condition could have quality of life. His life changed medical ethics. This should make an impact on choices offered to future patients and their families, in the UK and around the world.

To donate: www.donniesfund.org

The fee for this article has been donated to Donnie’s Fund.