When I went for the Nuchal Fold Scan at 11 weeks pregnant, the sonographer was not able to get Georgia to turn for any length of time, so he could measure the nuchal fold. He was very frustrated about it, she stayed very still and quiet, face forward, and he kept hitting the ultrasound probe against her, trying to get her to turn. Finally she did, and he got a brief measurement, which he said was under one millimetre. This was great! Not that I was worried, even though it was my first pregnancy over the age of 35, I was really doing it just to see the baby! As they are supposed to get three measurements to make out an average, I had to go away for a couple of hours, and come back after drinking some cold water, and another sonographer had a go. He was also only able to get one measurement, but this was also under one millimetre. For a nuchal measurement to be worrying, it had to be over 3mm, so it seemed a long stretch. I left there without a care in the world.
Still I worried, and didn't know why. I kept saying to Gaz that something was going to go "wrong". He is used to me being very optimistic, and couldn't understand this! When we had the 20 week scan, and found out we were having another healthy little girl, I tried to push these feelings aside.
At 32 weeks pregnant, I decided it would be a good idea if we drove 7 hours to the NSW south coast to camp with friends. It was a long, hot drive up there, and I started to swell up, something that had never happened in my other pregnancies. The friends that we were camping with insisted that I go to the chemist and have my blood pressure taken, and it was found to be a bit raised. They asked me to go in each day of the holiday for a quick blood pressure check. So then, I started to think that something was going to go wrong with the baby, and I was going to lose her before, or during birth!
So, when I found myself booking her into the special care nursery on the second day of her life, I did wonder if I had known all along, somehow, that there was something a little different about my girl.
The nurses in the special care nursery were lovely. They told me that Georgia had to be admitted due to severe jaundice, and the fact that her platelets were too low...and had dropped quite a bit over the two blood tests they had taken. Doctors came and spoke to me, and I asked if the problem was to do with her Down syndrome, and was told it was not related. This REALLY knocked me for a six...she had Down syndrome...surely that was enough? Now to be told she had some other serious health problem that was apparently un-related?
I'll never forget the day we got admitted. They rolled her humidicrib into the nursery, and handed me some pamphlets about free car parking when visiting your child in SCN. I made some stupid crack about how handy it would be to not have to go back and feed the meter all the time, and then started to cry. I sat next to Georgia's crib, and glanced over at a woman opposite, feeding her very small prem baby. I was overcome by an intense resentment towards her. That she only had to fatten her baby up, and go home, her ordeal just a distant memory. I had to take my baby home, and live with her condition for the rest.of.my.life.
More than anything, I hated myself for feeling this way. It wasn't like me at all, and I had had a normal baby, 3 times, had that beautiful experience of having a healthy child at full term, and taking her home. This woman had not had the experience that the books told her she would, and it was her first baby...she was entitled to grieve her loss too, but all I could think about was how much I would rather be in her shoes, than mine.
I was so shocked by the intensity of my resentment, that I left Georgia there and ran back to my room in tears. As I rushed past the nurses station, quite a few came into the room to be with me and give comfort. One of them stayed behind, I think she was the unit manager. She told me to let it all out, that I had every right to grieve, as I was mourning the hopes and dreams that I had for my girl, that could no longer be. Then she told me that the year before, her 16 year old son, her only child had a headache, and 6 weeks later he was dead from a brain tumour. So, she said, she sort of understood?
I looked at her in absolute horror at the tragedy of what she told me. I actually thought that it might have been her way of telling me to pull myself together, as my lot in life was not so bad, but she seemed genuinely sympathetic, as though she thought my "loss" really could be compared in some way to hers. I felt really ashamed, I had four children, all alive, and with me, and we could get over any hurdles. I ended up crying about the magnitude of this nurses loss, gave her a cuddle and dried my tears.
My life became a bit of a blur the next few days, in and out of the door of the SCN, lots of conferences with doctors and nurse, constant washing of my hands as I entered the sterile environment. Georgia's platelets were still dropping, and they were in touch every day with an oncologist at the Royal Children's Hospital, for advice on how to proceed. He had asked for a ultrasound to be done of Georgia's head, to rule out an internal bleed in her brain, and naturally this really shocked me. I asked how, how could this have happened? They said it was usually from baby being stuck in the birth canal. Nuh uh, I said, 55 minute labour, 2 pushes, this baby was NOT stuck! The results thankfully came back clear.
Now, up until this stage I had managed NOT to google this condition. I had googled Down syndrome a lot, and done a heap of reading on that, but had stayed away from this platelet condition - Thrombocytopenia. Finally, I could take it no longer, and went home and .....googled.
I think probably for the first time ever, I was GLAD I did. One of the first indications for this condition that came up was...you guessed it.....Down syndrome. Not un-common for it to be present at birth, but to right itself over the coming weeks, with the platelets climbing to normal again. To this day I am VERY angry about this. Had they simply told me this, I would not have worried, but to say it is completely UN-related, and look for other causes? This had me worried sick!
Gaz and I were fuming, and rang to get a babysitter for the other kids, so we could go back to the hospital at 9pm that night, and have a doctor paged. She was great, and said that they had to all these other tests to make sure they could rule out internal bleeding or any other cause. I mean, fair enough, but it is a pretty vital piece of information that they missed out.
At this meeting, I also mentioned Georgia's eyes. I felt there was something wrong with them, as she didn't look at me....didn't look at anyone. The doctor said that opthalmology consult was standard for any baby admitted to the nursery, so he would be around the next day, but there was absolutely nothing to worry about, as babies can't focus for the first six weeks, and don't see anything much. Gaz and I almost laughed, and figured that she probably hadn't had any children. We remembered our fascination when our first baby, Dakota looked eyes with us for about an hour, and searched our faces. Georgie's eyes were all over the place.
The next day I arrived in the morning to do her 9am feed, and was bailed up by the head nurse, who said that the paediatrician had heard a heart murmur that morning. We had thought she had escaped heart problems often associated with Down syndrome, so this was devastating news. But worse was to come. The ophthalmologist came up and said he had just examined her, and found cataracts covering both of her eyes - CATARACTS! I honestly thought you only got them when you were old.
It was all to much! This conversation was taking place right in the middle of the SCN and I just broke down. I think it must have looked much like those silly Walt Disney cartoons, where the kids starts crying, and tears fly horizontally out of it's eyes. That actually seemed to happen!
They took me to a room in the special care nursery that contained just a jug of water, and a box of tissues, and called the social worker for me. I asked the ophthalmologist how much she could see, and he hesitated before saying that she would be able to see...nothing. Completely blind.
The nurse thought it would be a comfort to me if she bought in my baby, so she took her out of the crib, swaddled her, and bought her to me. I remember cuddling her and looking down at her, sound asleep, so content to be in my arms. I would do anything for her, anything at all, give her any opportunity. But Down syndrome AND blindness. It seemed too much of a double handicap, too big a hurdle to get over.
(TBC with first visit to the RCH by ambulance at just a few days old).
