Richard’s wife was expecting their third child. They found out during the 20 week scan something was wrong. Richard’s baby Annie sadly died soon after birth.
“My wife and I were expecting our third child. Everything was good until we had the 20-week scan, where we were told the baby was measuring smaller than it should. A few weeks later, my wife noticed reduced movements so we returned to hospital. Within a few hours she was referred to a bigger hospital in Wakefield. They booked her in for an emergency C- section at 28 + 5 days. Baby Annie was born, weighing 1.15lbs.
“Annie was whisked off to NICU and within minutes was hooked up to a ventilator. After the stress of the delivery, everything seemed to calm down for a couple of days. We just thought she would get better and that we would be taking her home to meet her two older sisters as soon as she put on enough weight. She looked like any health baby, just a bit smaller. Other than that, she had no symptoms at all.
“Over the next few days it all slowly unravelled. Annie had a number of brain scans that showed things weren’t right. She also had a neonatal stroke. We had no idea what had caused all this. Due to a low blood counts she underwent numerous blood transfusions.
“It took 10 days for the doctors to come to the conclusion she had cCMV. The doctor said he had only ever seen one case of cCMV before. The nurses couldn’t really tell us much about it because they simply didn’t know themselves. The doctor spent quite a lot of time on conference calls with other major hospitals in the region.
“For four weeks Annie appeared to be improving. She had put on weight and had come off the ventilator. We had a brief talk about treatment options. Our doctor was very uncomfortable about giving Annie the antiviral. He said it was basically poison for the body and had terrible side effects. They debated about treatment for so long it got to a point where she was no longer strong enough to take the drugs after she was infected with E. coli.
“A week before she died she showed signs she was struggling. She needed oxygen and her stats did not look good. The hospital decided to transfer her to another hospital where she could receive more advanced treatment. It was at that point we realised it was critical. Now, months later, I look back and think how naïve we were, thinking everything would be okay.
“Once Annie got to Bradford the doctor called my wife, telling her she had only just made the trip. We arrived 20 minutes after ambulance. We sat in waiting room for about an hour while they tried to stabilise her. We were told how poorly she was. The machines were the only reason she was alive. She spent three days at Bradford and it was the longest three days of my life. We were 50 miles from home and our two little girls.
“Annie had sepsis. Her body was too weak to fight. We made the devastating decision to turn off the machines. Annie died at six weeks in my arms. In the first few hours, we were emotionally all over the place.
“The human cost to cCMV – well you just can’t put a cost to it. It has caused our family an immeasurable amount of pain and suffering. We got to the point where we were falling apart. The impact it had on our two children was huge. They just couldn’t understand why Annie didn’t come home. And, to our extended family. They travelled over 100 miles to be there to watch their granddaughter and niece die.
“Since Annie died we have had a little boy. During the pregnancy my wife was so scared about catching another infection. No health professionals seemed interested in talking about it or discuss preventative measures she could take.
“It annoys me how no one seems to understand or know how bad CMV is. You never hear about the devastating consequences to an unborn child. People should know it can kill a baby.”