Our twin girls were perhaps always destined to give me and my husband almost permanent anxiety!
At 32 weeks, in April 2015, I was rushed into hospital for the fifth time during my pregnancy, and Jasmine (3lb 10oz) and Florence (3lb 1oz) were born via emergency c-section. A rare condition called placenta percreata, where the placenta breaks all the way through the uterus, causing massive haemorrhage to the mother and denying the baby oxygen, meant I needed an immediate hysterectomy. Jasmine, whose placenta had essentially become defunct, was also in poor condition and needed inflation breaths and additional oxygen. Nevertheless, both babies made good progress, and were allowed home at almost four weeks, still tiny, but otherwise well.
Soon after, both girls developed a cold, with runny eyes and noses. Three days later, things very quickly worsened. They slept almost continuously and lost interest in feeding – soon we could barely rouse them.
By early evening, we were increasingly concerned. Jasmine became cold to the touch, even wrapped in swathes of blankets. We couldn’t understand what could be amiss and, thinking we were probably over-worrying, called 111. But as the operator took me through the standard questions, we realised something was very wrong.
I now couldn’t wake Jasmine, nor see her breathing. I was instructed to do CPR, which I luckily knew how to do. I was on autopilot until the ambulance arrived, but I still didn’t think either baby could possibly be that ill – only a few hours ago they’d been fine.
Both were admitted to intensive care, where Jasmine was put on an oscillator, with Florence soon following. Then the consultant told us Jasmine had a 50/50 chance of making it. We were in total shock; how had our baby girls become so sick so quickly, and how could we not have known?
They were still so tiny; 5lb and 4lb 7oz; and lay unconscious for days, with tubes, drips and wires pouring from their fragile bodies. Their lungs were too immature to cope with 'rhinovirus' – a common cold to most of us – such tiny babies are unable to cough. Our girls had been silently suffocating, and we’d had no idea.
Luckily, both girls slowly improved, and after 12 days were allowed home. However, only a few days later, Jasmine developed a serious blood infection, caused by bacteria entering her blood-stream during her previous hospital stay. As the bacteria coursed its way through her body, her head swelled, her lung collapsed, and she was diagnosed with meningitis and pneumonia. Hospitalised for 16 days, with Florence and our two-year-old son, Dominic at home, it was impossible to be the parents we wanted and needed to be. I felt my heart breaking.
Jasmine came home, then five weeks later both girls were admitted again. They had swollen fontanelles, high temperatures and then a rash. Again they were treated for meningitis, with ten days of antibiotics. Despite being four months old, both girls were still the size of normal new-borns, and doctors struggled to find veins to cannulate them. One afternoon, Florence suffered five failed attempts in an hour. Frightened and distressed, she looked to me for help. I could do nothing but hold her hand and try to keep her still and calm.
Three weeks later, only days after Jasmine had undergone a brain-scan under general anaesthetic, both girls developed their first cold for several months. This time, we recognised they needed help. Diagnosed with bronchiolitis, both were admitted again, with Florence requiring oxygen. They were plagued by it throughout winter, and we had many sleepless nights, mopping up sick and trying to soothe their almost-permanent coughing and crying.
After five months without any hospital admissions, we thought we’d made it. Then, in February this year, Florence became ill again. I took her to A&E, thinking she might need to stay in for a couple of days. However, basic observations showed immediately that she was very sick, and she was taken to intensive care. She needed ventilation again, and was treated with lots of drugs and physiotherapy as she continued to deteriorate. It took a week for her to 'bottom-out', during which time she was diagnosed with three potent viruses, a severe bacterial infection, pneumonia and collapsed lungs.
She came home after 20 days. Then almost immediately Jasmine fell sick and she too was back in hospital. Over the next few weeks, either one or both girls were almost always in hospital. Although neither needed intensive care, our nerves were shot. Trying to be at the hospital, yet retain some kind of normality for Dominic was impossible. We sought help from everyone we thought might get us through this ongoing nightmare.
The bronchoscopies, performed under general anaesthetic on their first birthday, found both girls had bacterial infections which were treated with antibiotics. Florence was also diagnosed with tracheobronchomalacia, a condition that affects the airways’ ability to cope with respiratory effort.
Jasmine and Florence spent 25 per cent of their first year in hospital, and are developmentally delayed by about four months. Prematurity hasn’t caused, but has been the catalyst, for most of their health problems. The early rhinovirus required intense treatment at such a young age, making them even more vulnerable to infection than many babies born much earlier or smaller. It’s terrifying that common cold viruses, of which there are hundreds, could kill our children.
However, since starting the medication, neither Jasmine nor Florence has needed hospital treatment. Medication is not a cure, and winter viruses may hospitalise them again. However, we’re in a much stronger position, and hopeful that our gorgeous and resilient little girls – now 16 months old and doing well – can start to live life like other children their age.
If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email firstname.lastname@example.org
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