I am a seasoned blogger and have taken the step of writing another blog, this time dedicated to my youngest son, W, who was born in Feb 2010.
He has wobbly eyes.
The medical terminology is 'Nystagmus'.
As he was born with it, and they have ruled out any explanation for why he has it, the full label is 'Congenital Idiopathic Nystagmus'.
He also has low vision, which I must say has improved since he was last seen by the eye specialist, which is going back to August 2011.
Even before he was born I sensed he was going to be poorly at birth. That mothers instinct. I had never felt it before with my other two sons, but had done when carrying my third child, who I sadly lost in my second trimester. I had a feeling that that baby and I were not destined to meet and I lost her on my middle son's 3rd birthday.
I fell very quickly for my youngest son W, very soon after my loss. I had several early scans to keep an eye on him, but towards the end of pregnancy I just felt odd. I felt that he needed to be with me, now, as inside my tummy I could not hold him and nuture him in my arms.
I had a four day failed induction. It was agony. The pessaries that are designed to soften the cervix
to encourage the breaking of the waters did not do anything. Nada. Not one milimeter of change - over four days and 7 pessaries. It did however render me incapacitated in walking normally and every step hurt.
The medical team however suddenly decided that I should go home for a week or so and come back. I argued that they had wanted him to be delivered, as I developed gestational diabetes during the pregnancy and they wanted me not to go overdue. This in part was because my middle son was born, naturally, weighing 10lbs 8oz, and he was not even classed as over due.
I found out that there were no slots available for a cesarian section as they had had an influx of emergenices and booked sections. This was why they wanted me to go home.
I stood my ground. They had forced chemicals into my body to make it start labour, stressed my body out with it all (and goodness knows what it did to W) and then shrugged and said 'go away'.
So after many, many conversations with the team (never the actual consultant himself, just his minions who do his dirty work and take the flak for his decisions), I was booked for a semi emergency section.
When W was delivered he needed oxygen (quite normal for section babies I was told, due to the sudden emergence from the womb). He was not given to me for around five minutes and I was becoming really anxious to have him.
When finally he was given to me - swaddled tightly and helped propped up against me by a midwife - he had the most grumpiest face I have ever seen. Scrunched up eyes and such a frown.
But then, his eyes opened and we saw each other for the first time, reflected in each others eyes.
He was beautiful.
And then he started rooting ( looking for breast milk). My other two babies had never done that and it was funny to see this natural instinct kick in with him.
Sadly, because of the section my milk took four days to 'come in'.
W had very low blood sugars and was heel prick tested every three hours. His feet turned black from the bruising of the constant needle punctures. He was also cold and needed to sleep on a heat mattress and swaddled up like baby eskimo.
I requested to see the placenta (I am interested in the amazing way our bodies support growing babies in utero) soon after birth, and the midwife wheeled it in on a trolley.
She did her assessment of it with me watching as she saw how interested I was with it all.
What was apparent was the colour. It was grey. Not pink or red. My other two had been pinky red. The time lapse from delivery was not the cause as it was not hours since then.
The midwife commented that my boy was lucky to be outside and not inside with what appeared to be a poorly placenta.
That gut feeling. I knew he needed to be born. I still linger over the what ifs. What if I had just accepted being told to go home and wait another week? What could have happened?
As for getting him well again, well the second my milk came in, W latched on (clever boy!) and it did the trick. His sugars rose almost immediatly and he settled down so much better.
Around the age of four weeks I sensed his eyes had a problem. I thought he was blind. But I told no-one. I was scared. I thought I was being over the top with paranoia.
I asked two friends of mine who had had babies within a week of me about their babies eyes. I noticed W's pupils did'nt react to light. He did'nt squint at sunlight. I tested him by standing at the window, curtain closed on a sunny day, and then opening them, and he did'nt react. They said their babies did.
At six weeks I mentioned it to my husband and he replied instantly that he thought the same but had'nt wanted to tell me.
We had a health visitor review at my house and I told her my worry. When W latched on for a breast feed his eyes wobbled and she came and stood over my shoulder to watch. She agreed it was not right..
To have someone agree with you makes it all real. Not just your imagination. Not just a newborn quirk - eye muscles can be weak at birth as baby has not really had to look too far in the womb!)
The health visitor said she would book a referal that afternoon to the eye clinic.
But she called and told me that in our area babies are not refered until at least nine months old (!) and that there was also a ten month waiting list on top of that. So my baby son with an eye problem was not going to be seen by someone until at least 19months old? I don't think so. In fact I knew so. I was'nt going to let them dismiss him or me.
I spoke to my cousin, K, who was (back then) a 2nd year medical student. I mentioned his eye movement and my fear he was blind, and she said she thought it was nystagmus. As we spoke on the phone I googled it on the laptop, and as she spoke I read and I concurred with her that it did indeed sound like nystagmus.
The next week I spent my life on Google. Bad bad bad. I was in a state.
The following week we had our six week postnantal check up at the doctors. I went first and everything was healing as it should apart from one area, but I did'nt care, I just wanted to get onto W.
I explained to the female doctor about my worry and what I thought it was.
She laughed. She told me it was very rare and could not possibly be that. She mocked me for getting way too ahead of myself.
And then she looked at him. She ummed a little. She got her stethoscope out and dangled it over his face and moved it side to side. She ummed again. She then started counting out loud."One,two,three"
She backtracked and said she too thought his eyes were not behaving as they should and that he was not able to follow the stethoscope as she moved it (babies at six weeks should follow an object held close to their face hence it being a part of the general six week check up).
But then she told me to give it a few weeks. It would probably settle down. His eyes only moved 3 beats at a time, side to side and then stopped for a few seconds, so it might settle down.
It did'nt. In fact it got worse. More beats side to side. And then up and down. And then corner to corner. It was so bad I could'nt look into his eyes like you would a new born. It made me so upset.
I took him back for a second opinion and had done some research into private investigation.
This doctor too was sceptical at the start, but she then agreed that his eyes did need attention. But again she told me what the health visitor had told me - no referal till he was 9 months old.
I then mentioned I would pay for a referal and to see the specialists at the hospital. She said we could see someone the following week then! Money talks it seems.
I was still Googling away and found evidence of brain tumours being linked to up and down nystagmus. It's very rare that it would be a tumour, but it was still a risk. I knew an MRI scan would be needed, long before I spoke to the eye doctor.
Our appointment was where the NHS patients were, but we were treated with a red carpet - all because we were paying for it.
The first person we saw conducted simple light tests. We held him in front of a fan so that the cool air made him open his eyes and then she held a light up wand thing and waved it slowly around him, moving it.
He turned his head! I exclaimed out loud " he can see, he can see" and started crying. I really really thought he was totally blind. He turned his head to wherever she moved the wand to. The distance was only probably 50cm away, but still, he could see!
His eyes did not follow as you would expect, but his head did, and that proved he was aware of the light.
I think my reaction brought it home to the woman conducting the test, that these were real emotions and built up worries, and she gave me the wand to keep!
We then saw the main man. The eye man. He looked at his eyes. Read the basic results. And then mentioned softly about the brain tumour risk, as he was concerned about the rotation of his eyes. As I had already read this it was not a shock and I was actually relieved he was taking me seriously.
W would need a general anesthetic as the MRI would take around 45 minutes and a baby can not be expected to lay perfectly still all that time.
The main eye doctor escorted us personally to the lifts and was so courteous to us. It is amazing what paying for private treatment does really.
I then had a letter come through the mail with the date of the scan.
I will continue this in my next blog entry.
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