On the 27th June 2006, when Christian was born I remember the sheer delight on my husbands face, as we had our boy. He would be Eve’s little brother who would be 2 the following day.
Within 24 hours it became apparent that our new arrival was poorly. He had developed jaundice and was moved to special care. He was given light therapy but his jaundice was getting worse. The doctors knew then that it was not typical jaundice that a lot of newborns experience. His liver function blood results were scarily abnormal. Christian was then transferred to the Liver Unit at St James Hospital, Leeds.
Whilst on the Liver Unit, a series of tests were then carried out to diagnose Christian’s liver problems. Bloods every hour and scans. After a few days, the doctor told us that he had shown positive to Cytomegalovirus (CMV) and that this could be the cause of his liver problems. I remember thinking, ‘thank goodness it’s just a virus’!! Little did we know then the devastating effects CMV can cause. His brain scan also showed a few calcification deposits and he had already failed his newborn hearing check. His jaundice was so severe that he looked golden. His bilirubin levels were at 700, a normal result would be about 10.
We were told that Christian was a very sick baby and he may not survive. It was then that the reality of the situation really dawned on me and I cried like never before and I really hope I never feel that way again. It was beyond devastation. The emotion and pain that I felt at that time is truly indescribable. I remember trying not to love him as much as I did because the pain was unbearable – ridiculously selfish of me when I look back now.
The consultant told us that only time would tell as to how badly the CMV would affect Christian. He may not be able to walk, talk, feed etc. His hearing and sight could be damaged, and the calcifications could affect his brain function – but as least he was alive and ten days later we were allowed to bring Christian home as his liver functions had started to show an improvement.
Over the next few weeks, we seemed to be given bad news after bad. Firstly, he was confirmed with bilateral profound hearing loss. I think myself and my husband went into shock at that point. I felt very low and down for some time after receiving that particular news. He was fitted with hearing aids at about 4 months old but they constantly whistled and new moulds were needed all the time.
The physiotherapist told us that he had low muscle tone and they could not predict how his physical development would progress. He had brain damage from the calcifications and again we were told that only time would tell the consequences of this.
When he was about 2 months old he also experienced breathing problems and we were told that he had pneumonitis (inflammation of the lungs), also due to the CMV. It was at this time that we treated him with Valganciclovir for 6 weeks. Fortunately, he remained well during the administration of this toxic drug and his pneumonitis cleared.
The following weeks and months were filled with hospital appointments. I couldn’t return back to work at this time as my days and weeks were too busy meeting Christian’s medical needs.
Christian never really fed easily, especially when I compare him to my daughter Eve. It was always a struggle for him to take any more than 4 ounces of milk. I was told to wean him early as the medics also thought that he was suffering from reflux, although all the tests came back negative. As time went on his feeding was getting worse, he very rarely opened his mouth for food and at about 6 months old he started to vomit anything he ate. Our days were filled with feeding, vomiting and feeding again. We never left the house as he would vomit that much he would always need a bath. It was truly awful. As a result of his inability to keep food down, he had a procedure called a Nissen’s Fundoplication and a gastrostomy. The Nissens is a wrap around the top of his stomach to stop him from being sick and the gastrostomy was so we could tube feed him. He continued to retch frequently and still does, although this is reducing.
I was consumed by watching his development and hoping and praying that he might be ‘normal’ and just deaf. As time went by that dream became obviously unlikely. His development was slow but he rolled….then he sat…….then he stood…….and eventually he walked!! Christian was just over 2 when he took his first steps. Although his movement was not fluid and typical and it still isn’t.
When Christian was 18 months old he had bilateral cochlear implants and was switched on a month later and, on the whole. wears them well. He has had another cochlear implant operation as his first right implant failed.
Christian now has a diagnosis of profound hearing loss, autism and a learning disability. He walks and tries to run. He cannot speak but will communicate by dragging you by the hand or by having a tantrum! He goes to a special school for the deaf, as a result of winning a tribunal as our education authority would not agree to our SEN statement and school choice. He can understand a few words and requests and continues to make slow progress in this area.
He has been through so much already, and I owe it to him to make sure he has the best chance of meeting his potential. We do an exercise programme with Christian which has been successful in shedding his new born reflexes and promoting adult reflexes (a normal progression for most babies). We also see a nutritionist whose expertise is autism. His supplements and treatments are keeping him healthy from the inside to promote good health and support his brain function.
We have since had another little girl, Fearne, who is now 3 years old. During this pregnancy, I had bloods and tests taken to check for immunity against CMV and other potential viruses. I also had Downs testing. I found out that I did not have an immunity to toxoplasmosis and armed with this information took extra caution.
I believe that although this journey at times has been very hard and extremely emotional, Christian has had a profound and positive effect on all the family. Some may call it a ‘reality check’. His determination and contentment inspires me and every day I am reminded as to what is really important in life and all those problems I used to have, in the grand scheme of things, are really very insignificant.
Christian is our beautiful boy, who we adore. He is loved immensely by his two wonderful sisters. I used to think about the child Christian should have been but not any more…..I love him just the way he is.
Written by Lisa – mummy to Christian