At 33 weeks pregnant, early one morning my waters broke unexpectedly but I did not go into labour. I went to hospital to be checked out and was told that I would need to remain in hospital until I gave birth during which time I would be monitored to ensure that the baby was ok. I was given steroid injections to mature the baby’s lungs should I deliver prematurely, but the plan was to try and rest and avoid a premature delivery.
A week later I went into labour and Connor was born into a delivery suite with a full crash team present. He was whisked away immediately to the special care unit without even the chance for a look, let alone a hold. That night whilst we were coming to terms with the whirlwind of his delivery we were taken to see him and given a photo. This was a completely different experience to Seth’s delivery as although Connor was born and taken immediately away from me this was due to his prematurely and I didn’t at the time remember being concerned.The following morning whist I was alone and waiting for Connor’s dad to return to the hospital I was visited by an obstetrician who introduced herself then asked ‘what abnormalities do you know about?’ I was shell shocked, ‘none I replied’. She went on to explain in a heartless cold clinical manner that Connor’s spine had not developed normally, he had a number of missing and deformed vertebras, congenital scoliosis and spina bifida occulta. It was all so confusing we had never been informed of any problems during our ultra scans. I couldn’t understand how such a major thing could have been missed. She continued to explain that he had a heart murmur, only 1 kidney, a condition called hypospadias; only one nostril in his nose was open. They would need to send him to Alder Hey to have a MRI scan to see if he had been born with any congenital brain damage. As parents we were devastated. We couldn’t take it all in, you want your baby to be in good health and never had we anticipated or were we prepared for all the conflicting information we were then bombarded with, one doctor even told us that he may never walk.
Connor was sent for test after test and thankfully they all came back positive. His brain was normal, his kidney was functioning fine, the heart murmur was common in premature babies and it was hoped it would close in time. He would need corrective surgery for the hypospadias, and a nurse managed to pop the closed nostril open by accident putting a feeding tube up there!At the time we were worried and frightened for Connor as there seemed to be so many different things wrong with him. I cried so much because at the time you can only focus on what the doctors are telling, it was so overwhelming and was hard to imagine what the future may hold.
Connor was genetically tested as were the immediate family and it revealed that Connor and some members of the family had a chromosome abnormality which was responsible for Connors problems. We began to see a genetics doctor to try and understand the implications of these findings and what that would mean for us and the other family members.
Connor stayed in hospital for approximately 6 weeks and eventually came home under the care of Alder Hey as an outpatient to be monitored.
I don’t know if it was the fact that Connor was premature, that maybe I didn’t bond as he had been in hospital for so long or whether it was coming to terms with his problems but I could not mange or function very well as being a mother of a baby. I struggled so much emotionally and felt a failure in every way at my inability to manage.Connor was a hard baby and as I struggled on I felt more and more like a failure and a bad mother. He didn’t feed well and was chronically constipated. The doctors and health visitors were rubbish and just fobbed me off and being a young mum I did have the confidence to trust my instincts that there was a problem. At 12 weeks old Connor was taken into hospital for a double hernia repair as a result of his chronic constipation.
After the hernia repair I remember the surgeon coming to see us to explain that the repair had gone well however, whilst carrying out the operation they had discovered some further abnormalities which could indicate that Connor may be suffering from the condition Cystic fibrosis. It was horrific the next few weeks whilst more tests were carried out to ascertain whether or not Connor was suffering from this condition. I remember at that time friends trying to reassure us but all I could think was that my baby might die and there was nothing anyone could say to make me feel better. Thankfully the tests revealed that his lungs were healthy and he did not have this condition.
Over the years we have had many ups and downs with Connor like most families. He continued to be a weazy and sickly baby and eventually after 18 months of sleepless nights with him not being able to breath and constantly being sick the doctor confirmed he had asthma.At 18 months Connor had the hypospadias corrected as he was frequently suffering from infections and had trouble passing urine. This was a horrible experience as he was older and more aware. I remember in particular after surgery when he was brought back to the ward him being hysterical and pulling all the cannulas and other wires from himself. He had a catheter temporarily and that also brought with it complications as he suffered excruciating bladder spasms. I would walk the corridors for hours with him in his pram looking at all the murals trying to take his mind of the pain. Recovery was slow and he had to have further surgery to remove a build up of scar tissue which again was preventing him from passing urine.
Regardless of any problems that Connor has suffered in the past he has grown and developed into a happy child who has engaged in all types of physical activities and have never just stayed on the side lines.So long as he has been aware he has always had continued care from Alder Hey Children’s Hospital and for the past 11 years they have monitored his spine and tracked the growth and movement.
It was absolutely heart breaking this week to be told the devastating news that Connor now need to have surgery on his spine. He is to undertake some more testing and so long as nothing sinister is revealed he will be placed on the surgical list for a spinal fusion which currently stands at a 9 month wait.
Connor is very frightened and worried but I know that because of the massive support network Connor has we will get him through it.I am so proud to be the mother of such an exceptional child and he truly is my Angel. Over the years he has never held back in life and I hope that following his surgery he will be able to continue to strive and succeed in everything.
Glossary / links for medical terms used
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