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!). Like his brother, Samuel 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
The energetic and playful Samuel who throws whatever he can get his hands on contrasts greatly with the descriptions from his first year. After a normal pregnancy, Samuel was born with a rare genetic condition called trisomy 13. He was the first child to be born at Barnet hospital with the condition, and the genetic consultant had to google the condition themselves as so little was known about it.
Like many parents of a child who receives a life-limiting diagnosis, Robert and Jana were advised against googling the condition. When they innverability did, they were met with the shocking stats that 95% of children with this condition die before the age of one. In these early months, there was very little information available, and 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 a decade. This life-saving surgery was delayed many times – both because of COVID, but also because Samuel needed to put on more weight to give himself the best chance of recovery.
Maintaining his weight has always been difficult for Samuel – largely because of his reflux, which led to Samuel sicking up most of his meals. This eventually led to an oral aversion, as Samuel relationship with food was damaged. The problems with food, combined with a list of infections, led to long stays in hospital for Samuel and therefore his family – all taking place during COVID. 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. Myself and Jana weren’t able to be in the hospital room with Samuel at the same time, which was really difficult. Freddie was also struggling, as he found it so difficult us being in the hospital so much.”
As Samuel received further diagnosis, including hernias and hearing loss, there was much 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 these long hospital stays that they met Kirsty, who is a Music Therapist at Noah’s Ark. Kirsty was able to introduce Jana and Robert to the hospice, where they eventually received support from a range of services – including Music and 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.”
RESPITE
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 Condit
“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.” – Jana
OCCUPATIONAL THERAPY
TIME FOR FUN
“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” – Robert
“Having a child who is seriously unwell is completely eye-opening. The thing I love about Noah’s Ark is we can just speak about the experiences that we have had. You are so holistic in your approach – you have so many services which is amazing when you have a child with such complex needs.”– Robert