Samuel’s story: Doctors have helped us plan for the worst, but each day I pray for a miracle
Samuel was born with his entire right pulmonary artery missing – a rare congenital heart defect that often goes undetected at birth. This meant he wasn’t diagnosed until he was four years old. Due to the nature of Samuel’s heart condition, surgical options are limited and recently the family has received some devastating news.
“They called me in for an appointment and said that they can’t fix his heart. That he might not live a full life. It was an utter shock. They said anything can happen now. I’m hoping for the best, but every day I’m worried sick,” says mum Bukunmi, who lives in Rochdale, north of Manchester, with Samuel and her younger daughter, Olamide.
“My son is a very bright 6-year-old, very loving and always ready to be the best to me and his little sister. He loves school and also loves to read. He always looks forward to going to church on Sundays. He used to be really active, always running around. But now he’s so tired all the time. He’s often in and out of the hospital.”
Bukunmi says everything seemed completely normal until Samuel went to school and she started noticing how tired and out of breath he was becoming compared to other children. He even struggled to walk to school, so much so that Bukunmi would have to carry him on her back while pushing his younger sister in the pram.
Samuel was referred for specialist tests at Royal Manchester Children’s Hospital, where they soon picked up that his blood oxygen levels were shockingly low at just 65%. A normal range for a child of his age would be 97-100%.
This prompted a full and immediate investigation during which scans revealed the extent of his diagnosis – a complete absence of his right pulmonary artery. Samuel was booked in for emergency surgery to implant stents into his heart to increase his oxygen circulation.
Unfortunately, the surgery was only partially successful, explains Bukunmi: “They tried to implant two stents, but due to the complexity of his heart they were only able to do one. So, although his oxygen levels improved to about 70/80 initially, it’s now started dropping again and his symptoms are getting worse. But there’s nothing more they can do.”
The hospital has worked with Bukunmi to draw up what’s known as an Advanced Care Plan. It’s a document they must carry wherever they go that lets those caring for Samuel know what to do if any potentially life-threatening complications arise.
I’m so grateful for this support at a time when I felt all hope was lost. It’s awful not knowing where your child’s next meal will come from. To everyone, the nurses, the school, my family support worker and of course Together for Short Lives. Thank you, you have all been really, truly awesome.
Bukunmi, Samuel's mum
Bukunmi, a single parent, says that coping with the news has put enormous strain on the family and her mental health: “It has been incredibly difficult; the bills have been piling up. We have no family nearby and I have had to start asking friends for food. Sometimes I wouldn’t eat for two days so my kids didn’t go without.”
Thankfully, Bukunmi’s family support worker helped her reach out to Together for Short Lives. She was able to access a food shop through our partnership with Morrisons, plus an emergency grant through the charity Turn 2 Us, available to parents of seriously ill children who have had a life-changing event in the last 12 months, such as a worsening prognosis.
The money helped Bukunmi pay off her phone bill and reinstate Wi-Fi in her home, allowing her to speak more easily with close family living abroad. The rest she is keeping to spend on food for when our delivery runs out.
