Samuel can often be found in the Soft Play room at The Ark with his parents, Robert and Jana, and his brother Freddie (who can be heard just as much as he can be seen!). Samuel, like his brother, is a curious, energetic and playful little boy. When asked what Samuel loves, Jana says:
“Samuel loves pressing buttons, throwing things, and the piano! He loves flashing lights and music – most of all he loves his brother. He’s a very happy little chap.”
When you see Samuel playing with his family, often the only thing that immediately indicates that he has a life-limiting condition is his helmet, which he wears to combat the effects of many months lying on his side in intensive care. This is almost always decorated with stickers, which will change depending on the time of the year – at the time of this interview, bunnies and Easter eggs were featured.
FIRST CASE OF RARE GENETIC CONDITION
This energetic and playful Samuel contrasts greatly with how his parents describe his first year. Samuel was born with a rare genetic condition called Partial Trisomy 13 – the first child to be born with the condition at Barnet hospital.
Googling the condition they were met with the shocking statistic that 95% of diagnosed children die before the age of one. They were left thinking their new-born only had weeks to live.
When they eventually met with another consultant, they were told that as long as his heart could be operated on, there was no reason why Samuel couldn’t live for decades. This life-saving surgery did eventually take place, but was delayed many times – both because of COVID, but also because Samuel needed to put on more weight to give him the best chance of recovery, which he was struggling to do, due to reflux.
This all led to long stays in hospital for Samuel and therefore his family. When asked about this time, Robert said:
“It’s hard to remember how you felt. You are literally awake all the time – like a walking zombie. Freddie was also struggling, as he found it so difficult us being in the hospital so much.”
As Samuel received further diagnoses, including hernias and hearing loss, there was a lot of focus on his clinical needs. Like many other parents in a similar situation, Robert and Jana were becoming concerned about his mental and social development. As Robert describes:
“We were really concerned about his mental development. And because of COVID all of the non-clinical services were seen as ‘unessential’ so it very hard to access any kind of advice.”
MEETING NOAH’S ARK
It was during the first three months of Samuel’s life that they met Kirsty, a music therapist at Noah’s Ark, on the Neonatal Intensive Care Unit (NICU). Kirsty was able to introduce Jana and Robert to the hospice, where they eventually received support from a range of services – including Music Therapy, Art Therapy, Occupational Therapy and Family Activities. Reflecting on their initial impression of Noah’s Ark, Jana said:
“At the start, we didn’t really appreciate all of the different services Noah’s Ark offers. Like a lot of people, we thought a children’s hospice was only for end of life – but it is so much more than that. A well as all the different services, it’s just nice to be able to talk to people who understand what’s going on.”
Samuel’s needs are complex which means he requires round-the-clock care. Jana and Robert were providing this care alongside raising Samuel’s brother, Freddie, and managing their childminding business (which they have since been forced to close). The pressure and lack of sleep, combined with the uncertainty around Samuel’s condition took its toll on the family, as Jana started to suffer from panic attacks.
Jana and Robert are now provided respite thanks to the specialist care and nursing team at Noah’s Ark. This allows them to take some time to themselves and catch up on things that the otherwise wouldn’t have the time to do. Jana says:
“The respite care from Noah’s Ark has always been really professional and reliable. Having that service gives you a lot more confidence to help you cope with the day.”
Samuel is reaching a huge milestone, and will be soon attending regular nursery. During this transition Jana and Robert have been receiving full support from Noah’s Ark’s Occupational Therapist, Lucille. Lucille provides advice and support to enable access, self-empowerment, independence and self-management. As Samuel is less mobile than other children his age, Lucille organised getting a funded Bugzi – a powered indoor chair. The Bugzi has given Samuel the freedom to explore the world independently. Jana beams:
“The Bugzi is going to really help Samuel interact with the other children at nursery. Lucille has been amazing at helping us with this.”
An important part of Occupational Therapy is creating the conditions for the child to enjoy play. One of the ways Lucille did this was by introducing the Lecky Early Activity System, which physically supports babies and children as they play and explore.
Lucille has also supported the family in using the Primo Sleep System to help ease Samuel’s reflux during night feeds, which is something he was with struggling with at the time.
TIME FOR FUN
Like all children, Samuel wants to have fun and play. Noah’s Ark provides a safe space for him to do so. From enjoying The Ark’s Soft Play Room; to art and music sessions; to ‘Charlie and the Chocolate Factory’ themed family days – The Ark is a place where Samuel and his brother can have fun together. As Robert explains, having these spaces is so important:
“Freddie is interacting with his brother a lot more now. We were really worried to start with that they weren’t going to bond. It’s lovely to see them playing together at The Ark. It’s so important to have spaces like this so that you know are safe so you can feel at ease letting them have fun as children.”
Thank you so much to Samuel, Freddie, Jana and Robert for sharing your story with us – we can’t wait for more fun times ahead.