I started this blog as a bit of an escape from the nightmare time I was having with my little boy, but many people reading this wont even remember. This is our story.
When my boy was born he went blue and the scenario was awful, its ingrained in my mind along with the trauma of his birth. However, he came through that and we went home after a day. Boy was our miracle baby, we had been trying to conceive for a very long time and we didn't think we would have children. It was a bit odd because he demanded to be fed every half an hour or so, for at least half an hour sometimes an hour or more. This was twenty four hours a day and when I reported this to the midwife and the health visitor they told me this was totally normal. My instincts told me this wasn't right, after all, when exactly was I supposed to get any rest at all. I can only describe this as hell and I wanted to give him back, I felt I had made a terrible mistake, that I wasn't meant to have children. I can remember crying, wishing that someone would take this baby away from me. I didn't bond with him properly for at least a year on reflection.
When he was about two and a half to three weeks old, some friends were due to come and visit. They came around at exactly the same moment as the ambulance arrived. I don't know who was more shocked, but weirdly we all held it together for their visit. Boy had turned blue and passed out, then he came round and went through a series of different colours. We had phoned NHS Direct who promptly sent the paramedics around. By the time they came he was alright and they looked at us as if we were over anxious new parents. In the end, after our friends had gone home we decided that a trip to A & E might be in order. I think it was the shock of it all that made us wait whilst we had tea and cakes with our friends.
A & E was awful, we had no food, we had to wait for hours whilst he was monitored, blood tests were taken (he still has the marks) and it was decided he was alright. We were anxious parents, we got a grilling; "Was this our first baby? Did we have any experience with children?"
Knowing looks were exchanged. We were told to video it if it happened again. I questioned the sensibleness of this idea, and was told that it was the only way we could get a diagnosis. They didn't believe us, clearly. Your child is turning blue and has stopped breathing, obviously you will go off and get the video camera. I have questioned everything a doctor or paediatrician has ever told me since.
I then had several weeks of boy turning blue on me and passing out, then coming around. This happened perhaps ten times a day. I was alone with a new baby who passed out. Never sure that he would come back again. It was grim. I took him to the doctors and got all sorts of stupid explanations and a referral to the pediatrician for about 6 months time. I wanted to just give him away, no-one would look after him to give me a break as they didn't want to me the one if he didn't come back from one of his blue turns.
Eventually, after a really bad episode, I called the husband home and we rushed him to A & E and sat there and insisted that they give us some help. I had spent hours and hours scanning the Internet (which is how I fell into blogging as a good idea). Eventually, I discovered that some of his symptoms were very similar to a child who had Silent Acid Reflux. I mentioned this to the pediatrician at A & E and he agreed. We had self diagnosed our child.
From this moment he was given infant Gaviscon and Renitidene, it helped. However, the breath-holding (caused by the pain of the acid in his throat) had become behavioural. This was a real problem, it meant that every time he didn't get his own way or was reluctant to do something he would simply hold his breath and pass out. I was given advice, blow hard into his face and ignore it. He would come round, there was no question of it. That's easy to say when it isn't your child. It is also incredibly hard to ignore a baby or toddler. It was also hard to deal with in front of others; they were shocked by the breath holding, shocked by my behaviour towards it and I found it frankly, embarrassing.
Even though we were reassured that he would come back around I still had thoughts in the back of mind that one day he wouldn't and I would be left standing there with a dead baby. Hardly anyone would have him and the childminder quickly refused to look after him on the grounds of safety, making it very stressful returning to work. I still think of him as fragile and wonder if he will make it past childhood.
So, we ploughed on, you have no choice in these situations. Boy would lose his temper frequently, turn blue pass out on the floor and have what essentially looked like a fit. I would lose another year of my life with the stress of it each time. I have to say, I never ever thought parenting would be so hard, I have lost count of the number of times that I would have wanted someone to take him away.
This year when he was about three years 4 months I took him to Playgroup. He didn't want to go, he never really enjoyed it until the last term. It was stressful sending him. I am surprised I don't have more grey hairs. I think some of this is charted through the blog, of course, by this time I had Fifi who by comparison is an easy baby, but demanding in other ways. Anyhow, Boy walked in, made a fuss, turned blue yet again and passed out. At this point I turned my back and walked away. I left my baby to his fate. Never, ever, have to felt so guilty. This moment is ingrained in my memory, I was so traumatised that I got into the car Zombie like and drove to work slightly shaking. I sat down at my desk and wondered what had become of him. I had become hardened, it's very hard for a mother to walk away when their child is crying, but when you are not 100% sure that he will be alive when you next see him, you have reached an entirely new level.
As it happened, this (touch wood) was the last episode of the breath-holding. It's been a journey and not one that I would wish on anyone. We have had our ups and downs. I have had moments of despair and misery and moments of joy with the little fella. I would not ever wish to live life without him now, but I have done. It is this which has bought him closer to me than I could ever imagine and I find it quite hard not to favour him over my daughter who I have always adored and feel secure in the knowledge that she will always be alright.
Now boy has his issues with speech we are onto a different journey, with its own ups and downs. However, it's all part of what makes him special. I think what makes the journey of our lives together so precious is the fact that I had always thought that my children would be perfect. I never expected them to be above average or anything like that, but I didn't anticipate any medical issues, and this is one. Just because something isn't physically visible doesn't mean it's any less demanding. Would I have signed up for it all right from the start if I had known? The answer is no. Would I have signed up for my wonderful little boy? Yes. I would do it all again and again. When he told me that a little child at Playgroup had said that his talking was 'rubbish' and that he was 'rubbish at it' I felt crushed for him as he has overcome so many things in his three years of life.
Don't take what you see at face value and never, ever judge someones behaviour on first impressions. If you think there is something wrong with your baby, there probably is. Even if someone appears together, organised and confident with their baby they might not be.
2010; An end to the breath-holding
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