“Little Aqsa Rahman marked her second birthday towards the end of last year. And it was more than a celebration; it was a miracle,” says mother Ruzina.
The tiny premature baby girl was not initially expected to live. Aqsa was born by caesarean section at 34 weeks with a complex range of conditions. Doctors had been increasingly concerned following an MRI scan which revealed the Aqsa’s head was not developing as it should. She weighed just 3lbs 4oz at birth.
The little girl has a chromosomal translocation. It means her head is smaller than it should be, which affects the brain. She also has a small mouth and chin and was born with a cleft palate.
On top of this, she has a heart condition and problems with her eyes, which means she is registered blind. Her eyelids had been permanently shut since birth. Aqsa’s narrow airway also means she struggles to breathe and additionally suffers seizures.
She spent the first five weeks of her life in an incubator, clinging to life. Saiful, Aqsa’s dad said: “With the complications she had, her survival rate was low. We were told to fear the worst. But we weren’t going to give up on our little daughter.”
Doctors agreed Aqsa could go home and live with her parents, if they were able to care for her complex needs. That’s when one of the biggest challenges for parents Ruzina and Saiful began. “Our bedroom’s set up like a hospital,” says Ruzina.
Aqsa had to be fed every three hours by a tube through her nose straight into her stomach, known as nasogastric (NG) feeding, which required specialist clinical training for her parents. Even then, tiny Aqsa would often bring most of her feed back up. Her breathing was difficult due to her narrow airway and required constant assistance from a ventilator and then there was the lack of sleep.
The Leicestershire couple were told their little girl’s future hung in the balance and the immediate weeks ahead would largely determine her future. Yet, against all expectation, the little girl seemed to stabilise. “Suddenly, we had hope,” says Ruzina.
But at four months old Aqsa’s breathing seemed to rapidly worsen. “She would actually start turning blue in the face,” adds Ruzina. “We knew there was something else wrong.”
An X-ray showed her upper right lung had collapsed, leaving the little girl fighting for breath, a dangerous complication for the youngster.
Doctors agreed to perform a tracheostomy to ease her breathing difficulties. But there were problems during the procedure. The tiny surgical instruments were initially not able to penetrate the narrow throat area, due to twists in Aqsa’s airway. The anxious parents were told it was touch and go. Then, unexpectedly, Aqsa hiccupped. It was a pivotal moment. The instruments found their way through and the surgery was able to be completed.
“We were so stressed waiting,” says Saiful. “Aqsa could have gone into cardiac arrest at any time… and she would not have survived that. She was weak enough as it was and spent the next three months in intensive care.”
At 13 months it was agreed Aqsa’s progress had been significant and that she would further benefit from a gastrostomy, the creation of an artificial external opening into the stomach for nutritional support, as the little girl was still struggling with her feeding. At the same time, it was decided to open her eyes through a cosmetic procedure to lift her lids.
It was the first time little Aqsa’s eyes had ever been open, described as “the most beautiful moment” by Ruzina. She was allowed home in January last year. “We feel that was the turning point,” says the Loughborough mum. “It feels like the first time we have really had her at home, knowing she is likely to stay here with us…and we can focus on being a family.”
It has been difficult, she says, but they have coped. “We don’t see ourselves as different from other families – we just have extra luggage when we go anywhere!”
They have been able to travel to Carlisle and Blackpool, something they did not imagine would be possible when Aqsa was first born.
Now their little girl is starting to do things which have confounded expectations. She can roll, hold her foot, bring it to her mouth… and she is full of smiles. Saiful says: “We have constantly been told what Aqsa can’t do: She can’t sit, balance, walk, talk, or see; that she can’t do anything! But she can smile and feel!” She can also now open and close her eyes, something doctors didn’t expect either. Saiful is convinced his little girl can see shapes. “She can see. I know it!”
Certainly Aqsa’s progress has been amazing. The couple believe their determination - and love - have given their little girl a fighting chance to enjoy family life for as long as she can.
But it has been draining, the couple admit. Neither parent is able to sleep longer than five hours a night. “We have to take turns to stay awake,” says Ruzina. That’s where Rainbows has helped, offering some respite for the family, which includes the couple’s older daughter, Iqra.
“When you see Rainbows you realise how special it is. They have the best of everything for the children and their parents… it’s amazing,” says Ruzina.
“We have been able to do stuff with Aqsa we never dreamed of – like swimming with her in the hydrotherapy pool, which is truly wonderful. For us, a stay at Rainbows is like a holiday. And you can see Aqsa loves it!” she adds.
Dad Saiful is also hopeful for the future: “There were times we were told nothing could be done for Aqsa – that pain relief might be the only option as she slowly slipped away. But look at her now! I think it is about being positive and fighting for our little girl to give her the best possible chances… with lots of love.”