My son was born at 12.18am on the 28th July 2013 after what I thought had been a normal pregnancy. I got to Ipswich Hospital where I was preparing to give birth at around 11pm. During examination the midwife felt limbs so they scanned me to find it was his feet, the midwife pressed the alarm button. As quickly as possible they took me for a caesarian but on our way to the lift my sons legs had come. So I had no choice but to deliver him naturally with a few complications.
When my son was born his heart was only beating 2 beats a minute and he was not breathing. I remember lying in the hospital bed, looking over at all the medical team standing around my son who was born full term but only weighed 4lb 12ozs. After lots of failed attempts to get him breathing and to get his heart started they sent him straight down to the special care baby unit. I didn’t even get one look at him.
After treating me I finally got wheeled downstairs in a wheelchair to see my baby. He was all wired up to machines that were breathing for him and an ambulance was ready to take him to Norfolk and Norwich University Hospital to undergo treatment for the condition he was born in. My little baby was so tiny. I wasn’t allowed to travel with him because I had to finish being treated – the 6 longest hours of my life slowly passed and my dad took me to the hospital where was son was being looked after. I finally arrived to the hospital where I could see my baby.
Walking in to the room I was told he was very poorly and that they didn’t think he was going to make it over the next few days. I sat beside him all day not being allowed to touch him or hold him. Paul was permanently sedated and put on a cooling mat. After running tests throughout the week it came back to say he had congenital CMV. They did a lumbar puncture which revealed that the CMV was active. So they took him to have an mri scan which showed he had brain damage and had found multiple cysts on his brain and a bleed to the back of his brain due to an unseen silent fit he had. Paul was a very sick little boy and was being treated for numerous problems, most of which were caused by the CMV. He was baptized, as he was not expected to survive.
But I always said he would. They found a fungal lump in Paul’s heart, which also had to be treated with anti fungal medication for 6 weeks. But there was a high percentage chance that we would have to go for a heart operation. When he was about 6 weeks old we were transferred back to Ipswich Hospital where he started the treatment of ganciclovir and antifungal medication – then we went to Cambridge to have a Hickman line fitted in the main artery of his heart due to the other lines failing. Over the next few weeks Paul continued his treatment and we found out that the anti fungal medication had worked and he did not need a heart operation.
On the first of October we were allowed home for the first time but a week later we got admitted back to hospital and he was put on oxygen for 11 days due to bronchitis. Then in December he had his Hickman line removed.
Paul has ongoing appointments with audiology, physiotherapy, eye clinic, paediatrician, speech therapy, occupational therapy, special needs doctor, specialist health visitor.
He has been diagnosed with ataxia CP, he has low muscle tone, mild hearing loss in the left ear, a slight vision impairment, bronchiolitis retroactive syndrome and takes monalukast every night to help keep his airways open. Paul is now 26 months old and is unable to walk on his own.
But he succeeds in everything in his own special way. He is a happy little boy and I am a very proud mummy.