Meet The Children: Sabrina Bain

The odds have been stacked against little Sabrina Bain right from the start.
Born with Downs Syndrome and a very large hole in the heart, the pretty 21-month-old has spent most of her life in hospital.
“Everything we were warned could ever happen to her has,” mum Tracey says simply.
The catalogue of medical dramas include open heart surgery (twice – once to fit a temporary pacemaker and then a permanent one), a collapsed lung, reconstructive surgery to enlarge her airway, an op to fit a gastric feeding tube along with numerous emergency admissions as a result of infections.
She still has a leaking heart valve which will require more surgery at some point and, at the time of writing, a trachaeotomy tube which in the past has needed manually clearing up to 60 times a day.
“She’s been rushed to hospital in an ambulance six or seven times, so much so, that now when we dial 999 and say her name, the local operators know where to scramble to and what they are dealing with,” explained Tracey.
“A paramedic once told me he had never met a mother who was so calm during a 999 emergency. I told him – I’ve been through it all so many times, there is just no point in panicking.”
Poole, Southampton, Great Ormond Street – these hospitals are like second homes to the Bains. Sabrina has had repeated lengthy stays in all of them. In the first seven months of her life she spent just three weeks at home.
Her first Christmas was spent in Poole Hospital with the flu and it was looking like a repeat performance this year when she developed bronchylitis and was once again admitted. Luckily, she was declared well enough to go home on Christmas Eve.
A rare moment of quality time for Tracey and husband Bob and their children at home in Creekmoor.
For Sabrina is not their only child. She has an older brother, Kieran, who is five, but, more amazingly, she is one of a pair of identical twins. She has a sister Samantha, also born with Downs, but thankfully, with none of the complications endured by her sibling.
Mum Tracey suffered three miscarriages and had almost given up hope of having a longed-for second child, only to then find she was pregnant with twins.
But the joy and surprise that she and Bob experienced was soon overtaken by anxiety when Tracey started bleeding just six weeks into the pregnancy. An early scan revealed she was carrying twins: “I couldn’t believe it!”
The bleeding subsided and it looked like everything was going to be OK. But a fresh blow was waiting just around the corner.
“The 12 week scan showed that the babies showed a high risk of Downs Syndrome. I was offered further tests, but they carried the risk of miscarriage and with my track record I didn’t want to risk it.”
Living with that knowledge was stressful enough – but there was more to come.
At the 20 week scan it was noticed that one of the twins had a hole in the heart – another common indicator of Downs – but in this instance it was abnormally large.
“The doctors also thought that the same baby had a throat problem – there were signs that the throat had not formed properly,” said Tracey. “They were also very concerned about the heart condition.”
Medical opinion suggested that the babies were being carried in separate amniotic sacs – that they were twins conceived from two different eggs making it possible that only one of the babies – the poorly one – had Downs Syndrome. They were given the option to terminate their sick child.
Tracey and Bob were faced with an agonizing decision. “If we terminated one we could end up miscarrying both. We just couldn’t go through with it.
“In the past, I was always quite hard, quite determined about what I would do if faced with a situation like this, but when you are actually carrying a child, when you are faced with that situation for real, all that goes out of the window.
“Bob and I talked about it and decided we would – could – cope, if only one child was going to have Downs.”
But Tracey admits that, once again, imagining a scenario and actually facing it, are two different matters.
“There is such a taboo about Downs Syndrome, no-one talks about it. We hadn’t told our friends about the Downs aspect of the pregnancy, only the other heart and throat complications,” admits Tracey.
Five weeks before her due date, with Sabrina’s condition deteriorating, the decision was made to deliver the babies early by caesarean.
“There was none of that wonderful chance to bond that I’d had with Kieran. I got to hold Samantha briefly, but Sabrina was rushed straight off to the Special Care.
“I ended up in an empty maternity room, no cards, no balloons and no babies. It felt unreal. It was like I had never given birth.
“Five hours later they wheeled my bed into the baby unit and I could see them properly. It was a lovely moment.”
Samantha was discharged after a week, Sabrina after two.
Tracey and Bob were still under the impression that only one of their daughters, Sabrina, had Downs Syndrome. But tests were to prove that the girls were, in fact, identical twins after all and as such would share this genetic abnormality.
“At least we knew where we stood, what we would be dealing with. From that moment I decided I was going to be positive about it.
“Those girls are going to have a normal life, doing normal things. They might be a little bit behind with their walking, but I have the same expectations for them that any mother would. They are going to have a good life.”
Sabrina has been through a long string of medical traumas but now, thankfully, the family are looking ahead to some of that normality that other families take for granted and they have only been able to dream about.;
Sabrina is finally ready to have her tracheaotomy removed and her gastro feeding tube taken out - she’ll be able to taste and eat food properly for the first time.
Tracey can’t wait.
“I’ve tried to stay brave throughout everything. There have been a few tears, but I simply haven’t had time to dwell on things with two other children, a husband and my father to look after (Tracey also cares for her blind father who lives at the family home).
“The only time I broke down was when I was told Sabrina would need a trachea. That I would never hear her speak or cry. I was taken onto a ward to see another little boy fitted with one so I could see what it was like.
“He couldn’t speak, just smiled at me. I really broke down then, couldn’t stop crying. It was as if all the worry and sadness and stress finally cam tumbling out.”
Coping with Samantha and Kieran during these prolonged periods in hospital for Sabrina have been a challenge, involving shuttling the family backwards and forwards on daily visits, an exhausting and time-consuming business.
Now that Sabrina is home, the Bains are getting extra support from Julia’s House.
“We’ve been to the hospice a couple of times for sessions – she has always loved lights, so she gets a lot out of a sensory room. but better than that is having a carer come out to the house.
“Community sits are brilliant. It saves all the travel and lugging things that Sabrina needs around. It gives me time out with the other children, knowing Sabrina is in safe hands.
“What Julia’s House does for people like us is fantastic. I want to support the charity in any way I can as my way of saying thank you.
“Kieran will be joining the siblings group soon. He has had to put up with a lot while all this has been going on and it is nice for him to feel special. It’s little extras like this that make Julia’s House so important..”
While Tracey is busy telling her story, the twins are in to all sorts of mischief, but it’s good to see.
She scoops up Sabrina for a cuddle and reflects:” For a long time I would not – thought I could not _ pick her up. She was always in hospital, wired up and looking so fragile. I felt I hadn’t really bonded with her like I had with the other two.
“But I have never questioned my love for her. She’s a lovely, lovely little girl, a real fighter.”
And to prove the point Sabrina struggles out of mum’s arms with a determination to rejoin her sister for some naughty fun and games with the CD collection – and who can blame her? This little girl has got a lot of catching up to do…