A South Yorkshire mum who nearly lost her little girl to a congenital heart defect when she was just a few weeks old is speaking out about her nightmare ordeal to raise awareness of the condition.
AMANDA Bell admits she was impatient for the arrival of her daughter Tanesha Ives when her due date came and went with no signs of labour.
But now she is grateful for those extra few days, since being two weeks overdue and coming into the world weighing a very healthy 9lbs 10oz almost certainly helped to save her life.
That’s because, unknown to medics initially, Tanesha had been born with a heart problem called Atrioventricular Septal Defect (AVSD). It meant she had holes in both the top and bottom two chambers of the heart, as well as a short valve, and open heart surgery was the only option.
In the first two weeks of her life the condition went undiagnosed and Tanesha’s weight quickly plummeted as she struggled to feed because her heart was not working properly and her lungs were filling up with fluid the muscle was not able to pump away. In a child of a lesser birth weight, surgery would have been even more risky - but some blessing came for the family in the fact that Tanesha was able to undergo the procedure at an average weight for her age, despite the dramatic drop to 7lb 2oz in just two weeks.
But despite this small saving grace, Amanda said the news her baby was sick was devastating to try and deal with.
Amanda said: “When they told me there was something wrong with my baby’s heart I just burst into tears - and then ran to the toilet to be sick. I knew by the way they’d explained it to me that this wasn’t some simple operation to fix it. The thought of the surgery filled me with dread.
“I just thought, ‘why me?’ I hadn’t drunk or smoked in pregnancy, I hadn’t taken hardly any medication - not even paracetamol apart from when it got really bad. I’d done everything right and then to be told your baby has a serious heart condition is just devastating. My first thought was that she was going to die.”
Although labour was traumatic - it involved forceps and several stitches - pregnancy had gone relatively smoothly and Tanesha’s first few days passed without major incident, she having passed all of the new-born tests routinely carried out.
But right from the start she struggled to feed and spent most of the time sleeping.
Amanda, also mum to Kirsty, aged 17, and Ryan, 15, said: “She would only wake up for a short time and a bit of feed before she went back to sleep.
“But the doctors had done all the tests and decided after four days that we were okay to go home. It was whilst getting her undressed for the bath that I first noticed she was breathing too fast - faster than my other two when they were her age.”
She alerted the midwife to her concerns, and again highlighted the difficulties she was having trying to breastfeed Tanesha.
The 36-year-old added: “I’d breastfed my other two and I knew what I was doing - she was just not taking it. She was constantly fighting to feed.”
The health workers began to keep a log of Tanesha’s weight - and made the dramatic discovery that she had lost 70g in only two days. She had also started vomiting regularly and her breathing was becoming even more erratic.
When she was two weeks old the tot was taken back into Barnsley Hospital where an ECG diagnosed the heart condition and she was transferred to St James’ Hospital in Leeds for specialist treatment.
Doctors tried to stabilise her condition, but soon advised Amanda that the heart surgery had to be carried imminently or else she might not make it to three months old - the preferred age a child should be when they undergo the procedure.
“This was on the Friday,” Amanda, from Athersley North, Barnsley, said. “Then the operation was scheduled for the Monday. They said they needed to do it quickly.”
In total Tanesha spent nine hours 15 minutes in theatre - the “longest day of my life” Amanda said.
She then spent three days on a ventilator in intensive care, before being transferred to a high dependency unit.
More complications followed when she contracted septicaemia and spent the next 10 days being pumped with anti-biotics and unable to take anything by mouth. But Amanda said: “After that she just did brilliantly!
“She was sent back to the ward where she remained for eight weeks and eventually we were allowed home.”
For the next seven months Tanesha made steady progress, but then problems breathing began to return.
Her oxygen levels were checked back at hospital and found to be falling.
The result was that last August little Tanesha was back in surgery again in Leeds to have a pacemaker fitted.
Amanda said: “It seems to have gone well.
“If the situation stays like this she won’t have to have it changed until she is about three years old.
“For now she is a typical 19 month-old - she all is all over the place, she is always talking! She loves dancing and is a little bit mischievous.
“She is my little heart princess, that’s what I call her. She has taught me such a lot about how to live life - to take things day by day and not to take things for granted because you never know what’s around the corner. I wanted to speak out about our experiences so that people can be aware of heart defects like the one Tanesha has - because often they are not diagnosed until it is too late.”