Eyes and other catastrophes

When the seriousness of Georgia's eye condition became apparent, the staff at the special care nursery were straight onto the top ophthalmologists at the Royal Children's Hospital. The head of opthalmology was consulted, and he said that the optimal time for surgery on children with cataracts was incredibly small, and he should see her in his clinic the next day.

The whole thing was bigger than Ben Hur! I became very grateful that I live in Australia, where the type of care that was offered to Georgia was available to her. As she was still a patient of the SCN, she had to be transported from Frankston to RCH (about an hours drive) by ambulance, and she had to have a dedicated SCN nurse with her.

How to transport her was also a concern. It was quite funny, as we waited to go the next morning, to see two ambulances officers walk into the nursery with a gurney, and an infant car seat. We strapped her into the seat, and then the seat was secured to the gurney. It looked very funny, and very cute (if I could work out how to get photo's into a blog post, I would put a pic in..). Off we went to the hospital, accompanied by Barbie, our special care nurse that had been bought in for the day.

It struck me how quickly things can start to seem normal. Only a few days into the journey, I felt pretty much ok, the tears had dried up to a degree (though there were of course to be many more), and I had totally forgotten a time that I ever expected to have a normal baby. Barbie was an American, and absolutely hilarious, and the two ambo's were great fun too. We laughed, all the way down to the hospital. Yes, LAUGHED.

As Georgie was wheeled into the eye clinic, I saw there were what seemed to be hundreds of people there. I thought we must be in for the long haul, but as we had come by ambulance, we managed to bypass all of this. I can't tell you how many times over the years that have followed that I wish I could magically bypass that two to three hour wait, again!

They put us in an examination room, and lots of people came parading through to see Georgia. Obviously it was a case like some of them had not seen before. Cataracts are something that can occur in children and babies with Down syndrome, but to be born with a set this bad occurs in less than 1% of kids with Downs.

Finally the chief arrived to examine her, and tell us the plan. By this stage, Gaz had arrived with the girls, and it was a regular Watson family outing. Our eye doctor, Mr Elder, took one look at the scene, and called for someone to take the other girls to the Starlight Room. They thought it was Christmas (hey, having a disabled sister is not going to be so bad, we get to to the Starlight Room, and get to have Macca's for lunch!)

Despite our unexpected cheerful moods, what he had to tell us was sobering. He said the optimum time for cataract surgery was at 6 weeks or age, but gestation played a part in this, so as Georgia had been born late, he would do the operation at 5 weeks old. He told us that in her left eye, he could see behind the cataract, and the eye structure looked healthy, so he felt reasonably confident that she would have vision out of that eye once the cataract was removed. The right eye was another matter, he said that the cataract was so thick that he was unable to see the eye behind it, and therefore did not know whether there would be vision out of that eye at all. Nothing scarier than the great unknown.

The surgery date was made, and we returned to the SCN, where I said a fond farewell to Barbie. She said that she didn't expect that when she got called in for the shift that day that it was going to be the funnest day ever, and I said it was rather un-expected for me, too. She was ace. Right after she left, one of the nurses came over and asked me what did I think of Bobbie? "Who's Bobbie?" I asked, confused. That's right, Barbie was actually Bobbie, and I had called her Barbie all day. She didn't seem to mind, and never corrected me. I guess she is used to it, as Bobbie really does sound like Barbie when said with a thick American accent!

A few days later, when Georgie was 10 days old, we were released from the SCN. Melbourne was in the grip of a heatwave, and even being mid March. the day she was released was 40- degrees. I'll never forget what a happy day it was, though, finally we were taking her home. When we got home, we did the Watson tradition, of taking her to all the rooms in the house, and introducing her to them. She didn't see any of them of course, but she seemed well pleased to be there, and settled in happily. She was a very relaxed, cruisy little baby, so easy to look after, so very easy to love. I think the first night home was the best nights sleep I ever had, with her in the bassinette beside me, where she belonged.

The weeks that followed were....ok. Nice even. Kind of normal, but with constant reminders that things were not. There was an appointment to have a heart echo done, to find the cause of the murmur (it was found to be pulmonary stenosis - a narrowing of the pipe between the heart and lungs, I think.....? But a mild case, and one that she was expected to grow out of my age 5, without any problems at all). Another trip to RCH to see an oncologist with regards to the platelets, which were at this stage on the rise. He confirmed that she did not have leukaemia, and I just looked at him in astonishment. Of course she doesn't have leukaemia, I said, it was never in question? He said that I was there as he was the one that liaised with the SCN during Georgia's stay there, with regard to the platelets, and because there were one or two blood tests where her white cells also showed some abnormalities, they did indeed think that she had leukaemia! No one had told me that, they told me not to worry that I was seeing an oncologist, a TERRIFYING word, as they were also blood specialists and didn't just deal in cancer, but also blood disorders. To this day, I don't know whether to be glad, or angry that I didn't know...but it was certainly a great relief. On the way out, we ran into one of Gaz's old fishing mates, coming in. His 3yo son HAD been diagnosed with leukaemia the week before, and they were there to discuss chemo. Nothing like that sort of thing to put everything into perspective.

Outside of all these appointments, I carried on as normal. I took the kids to daycare, and kinder, drank coffee with friends, drank wine with friends, laughed, cooked, cleaned and bottle washed. Came to grips with strapping 4 kids into the car, and taking them to the shops. Gaz and I both cried a lot in the first 10 days, but I can honestly say that was pretty much it. Not much more time, or heartbreak was lost on the fact that she had Down syndrome (some tears were spilled about things related to it, of course, but not the actual DS itself).

Quite a few friends said to me in the first weeks that I just looked so...normal. Like a happy, if somewhat frazzled mother of four would look. There was quite a lot of concern expressed that I was internalising it somehow, and it was all going to come out in some big rush, a breakdown. I said that I didn't think so, I wasn't in any kind of denial, and crazy as it might sound, I used to shrug, and say, "it's just Down syndrome". I know it is not a trivial thing, and I didn't want to seem flippant, but at the same time, that is how I felt. So many worse things could have happened. I could have lost her at birth, she could have cancer, so many terrible things, so much more terrible than this could have happened. To me, she was a baby, there to be enjoyed, my very last baby, and I didn't want to lose any of her babyhood grieving, as it was time that I would never get back. And to lose it to something that could not be changed..would have been such a waste. Soon, everyone accepted that this was just....me. Being who I am.

Finally the morning of her eye surgery was upon us. As you would imagine, not much sleep was had by either of us the night before. We left the other kids with family, and checked in at the hospital at 7am. Georgie was the youngest patient, and they usually do them in order of age, so there was very little delay, we saw the nurse and anaesthetic doctor and then they were wheeling us into the little room beside the operating theatre. Mr Elder came out to talk to us, and I was scared then, very scared, and I did cry. Georgie was dressed in a tiny hospital gown, and she looked adorable, and I just loved her SO MUCH. How could I hand my five week baby, little bigger than a newborn, over for a surgeon to operate on her EYES?

I asked Mr Elder whether we would be able to tell straight away if she could see? He said that she would not be able to see a lot anyway, as she would not no lenses (they would come away in the operation as the cataracts were stuck to them), and she would be left with a big vision impairment, but he said yes, we might see some difference in the way she used her eyes, which up to this point had just floated around, obviously not fixing on anything, as there was nothing to see. To this day, she had never looked at me, and that was one lingering sadness that I hoped desperately to see change.

Despite how scary it was, the operation was quite simple, and not expected to take long. We should be able to see her in 1.5 to 2 hours. It seemed like a lifetime, but we learned while sitting in the waiting room just off the operating theatre, reserved for parents waiting for their kids to come out of surgery, that it was not. We met other parents who were waiting for kids to have tumours removed, open heart surgery, for intestines that had sitting outside their children's bellies when they were born, to be put back inside. Operations that would take hours, and hours, sometimes whole days. I don't know how you would cope with that :-(

We were paged after just over two hours, to go to recovery to see her. I don't think I have ever sprung out of a chair that quickly. We walked (ran!) into recovery, and saw that her eyes were patched, as Mr Elder said they might be initially. The nurses re-assured us that the patches would not need to be on for long, and we were sent up to a ward to spend the night.

There, I gained a little more perspective, if I needed it. We were just in a general ward, not a specialised eye ward. We shared with two other patients, one a nine year old girl who was incapable of doing anything for herself, blind, unable to walk, needing to be fed. She had severe epilepsy, but her mother insisted that she had been born normal, and something had happened to her during her first immunisations...like a light had gone out, she said. The other was a little boy of 11 who had been riding his skateboard in the street outside his home, when a car had knocked him over, and he had a severe brain injury that would see him require care for the rest of his life. You can't look at what these parents were going through, and see Down syndrome for any more than what it is. Georgia's life ahead was filled with potential. Everything was going to be delayed, but nothing was deemed impossible. She would walk, talk, toilet train, feed herself, and have a really good quality of life. This other little girls brain was so damaged from hundreds of epileptic seizures a day that little more was possible for her than what had already been achieved. And this little boy, 11 years of learning, achieving, potential, all stolen in a split second.

The rest of the day was very peaceful. Georgie didn't seem in any particular discomfort, though she didn't like them putting the drops in. As they peeled back the patches I could see that her eyes looked pretty rough, like she had a bad case of conjunctivitis.

The next day we sat around waiting for news about whether we could be discharged as expected, as that day was my nieces wedding, and my eldest daughter was going to be flower girl! Mr Elder had already cleared us to go as long as there were no complications, and we kept her away from dust and out of direct sunlight. I was terrified something was going to happen to delay us - it was very nerve-wracking! Finally we were cleared to go, and as she was due for a feed, the nurse said she would get her a bottle, as we had a long drive ahead of us. In the meantime, she took off the patches, and washed her eyes in a little saline.

When she returned with the bottle, I picked up Georgie, and sat down to feed her. As I put the bottle into her mouth, she looked at me, almost as though she was locking eyes with me, and stayed that way through the whole bottle. I burst into tears, and said she can see, she can SEE. I didn't take my eyes off her the whole time, and my tears fell onto her face while she was drinking. There was not a dry eye in the ward, not a nurse, not another parent, all crowded round, watching a baby, see her mother for the very first time.

The Special Care Nursery.

Right through my pregnancy with Georgia, I was troubled by a sense of something not being "right". I have never considered myself intuitive, or psychic, not even a finely tuned 6th sense, and yet, I couldn't shake it.

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).

Georgia meets her sisters.

For such a long time, my eldest daughter Dakota had been waiting for "her" baby. She was four, and it was the first time that one of my children had actually understood that a baby was on the way. My other two girls, Indi, who was 3, and Montana not quite 2, would pat my growing tummy, and say "baby", but Dakota, a very mature 4, really got it. I enjoyed sharing it with her, and did so a little earlier in my pregnancy than I probably should have - as 9 months is a long time for a 4 year old!

The day I went into hospital to be induced with Georgia (the very last day of Before Georgia), Dakota went to kinder, and told the teachers that mummy was in hospital, and her baby was coming today. She was so excited!

This played on my mind a lot the first day of the After Georgia, as I waited for the girls to come and see their baby sister for the very first time. Georgia lay in the humidicrib in my room, under the blue lights, with her little mask on, totally oblivious to the fact that she wasn't supposed to meet her big sisters like that, she was supposed to be all swaddled, and laying in a plastic hospital cot, waiting for the love fest, for the first photo's, of how our family looked now. Oblivious to the fact that she was not the baby that everyone was expecting. I mean, she always knew, she always carried this little secret with her, she tricked 3 ultrasound technicians (and I can't honestly know for sure whether she would be here today if she hadn't...I don't know what I would have done), especially the first one, who couldn't get her to stay still long enough to get an accurate measure of the folds on the back of her neck. She was meant to be here. She had Down syndrome from the moment of conception, and I had walked around for 41 weeks imagining a completely different baby. She always knew.

I felt grateful that she was so blissfully unaware, of my pain, my fears, the endless tears that fell out of my eyes that very first day. For me, the guilt was crushing, the guilt for feeling so scared, so disappointed, so grief stricken, on the day that I welcomed this perfect little baby into the world. I had no right to feel these things....it.just.felt.so.wrong.

I had asked Gaz to bring the kids in at a specific time, when she was due to be taken out for a feed, as I didn't want them to see her for the first time through the perspex walls of the crib. He ran down the hall ahead of them to say they were here, and I lifted her out. Indi and Montana were distinctly underwhelmed, but Dakota ran over, and jumped up onto the bed, arms outstretched, waiting for her first hold. She cradled her so gently, so lovingly, and she thought she was a perfectly fine baby, with big chubby cheeks, and cute little newborn squeaky sounds.

We knew it would not be long before Dakota would know something was different about her baby sister. There would be many medical appointments in the first few weeks of her life, and therapists visiting the home. She is bright, my biggest girl, and she would know. So, I knew it was very important, what we did now, we had to react positively, as this could set the scene for their whole relationship. Dakota was going to have a sister with Down syndrome for the rest of her life, and it was going to have a massive impact on her, and Indi and Montana, too.

I dried my tears, and lay down next to my biggest girl, holding my littlest girl. I had waited for a long time for this moment, and I meant to enjoy it. I smiled big, I BEAMED, and I asked Dakota what she thought of her. "She's cute", she said, as she stroked the tuft of hair on the top of Georgia's head. "I'm going to help you look after her, always". I had to fight back tears again, when I thought how long always was going to be, when it came to looking after Georgia.

A few hours later, after the girls were home again with their aunt, Gaz returned, to find me in a bit of a state. I was pacing the room, like a caged lion, because that was how I FELT. I felt trapped. Trapped in this new reality, knowing that I could never go back to the old one. I said, over and over, "what am I going to do, I can't fix this, I can't fix it".

I kept remembering the time, when I was heavily pregnant with Georgia, maybe about 32 weeks, and we took our other 3 girls out on our boat. I sort of half waddled and half fell into the boat, and we put lifejackets onto the girls. We sailed from Frankston, pulling in at Mt Eliza and jumping out for a swim on the way, then continued on to Mornington. I remember saying to Gaz that this was so GOOD, the first time we had felt all the girls were old enough to be safe on the boat, and I felt quite sad that I was having another baby, and it was going to be another couple of years before we could do this again. Gaz said don't worry, when the baby is 18 months or so, we will all be able to be out on the boat all summer, every summer, no more babies (we were sure about that!) Sharing the good life with the ones we had.

For some reason, I kept thinking about that conversation...and realising that it wouldn't be happening now. That wonderful bit of freedom you get with every child, when they obtain those first bits of independence. When they first eat finger food, hold their own cup, climb into their own carseats, put their arms into the straps. Things that make life easier for any frazzled mum. I realised that Georgia was going to be a very long time doing any of these things, and there were some things that she would never do. It just made me feel very, very......tired.

I told Gaz of a dream that I had in the short few hours sleep I had managed since Georgia had been born. I was standing in front of a door, and there was a midwife there with me, who said that behind that door, there was my baby, and there were heaps of other babies too, all normal babies, and I could go in and get any one of them that I wanted, I could put this.....right.

"And what did you do?" Gaz wondered. "I nearly bashed the door down, and made a beeline for MY baby!" I was most emphatic about this, and it made me smile..this dream memory of grabbing her from her cot, and rubbing my cheek against her soft one.

"Well", said Gaz, through his tears, "there's nothing else for it, we just take her home and love her, and get on with the rest of our lives. We'll be ok".

Little did he know that the taking her home bit would not be quite so easy....we were soon on our way to special care.

(TBC!)

Georgia's birth.

Beautiful Georgie was born on 6 March, 2008. As soon as she was placed on my chest, I was troubled by something that I saw, a familiarity in her features...but yet, she looked nothing like my other children. I kept on frowning, at her, wondering why I did not feel the familiar joy that I had felt the moment my other three children were born.

A paediatrician came and spent an hour with her, fixing a cord perforation that had occurred when my husband Gary was cutting her cord. I kept looking over at him, at her, at the midwife, brow furrowed, trying to work out what was causing my disquiet. The paediatrician was looking her over very carefully, but I didn't think anything of that, just thinking that he was doing a normal newborn check, since he happened to be there. Everyone saw me fretting, and were quick to re-assure me that the cord bleed was no problem, and she would be fine. I just shook my head, and said, "no, it's not that. It's not that".

After about an hour, she was placed back on my chest, and I stared at her some more. She was beautiful - healthy, pink, and perfect, with a robust set of lungs on her.

The next moments will be clear in my mind, for as long as I live. Especially that searing moment where I realised what I had seen all along. I looked around the room, looked over at Gaz, who was chatting amiably with the beautiful midwife that had bought my baby into the world. I didn't say anything for a few minutes, instead wrapping the blanket a little tighter around Georgia, who had started to fuss again, and saying, "it's ok", and "you are going to be fine with us", cuddling, patting, re-assuring, and all the time looking between my husband and our new baby, waiting for a break in the conversation, and wanting to give him a little more time. Time to be normal. Time before I opened my mouth, before I said it, before I drew a line down the middle of our lives. The line that meant there would always be Before Georgia, and After Georgia.

Finally, I said very quietly, "The baby has Down syndrome". I thought I had been too quiet to be heard, but Gaz and the midwife flew to my side straight away. Gaz looked frantically at her, at me, and desperately at the midwife for reassurance.

She was so gentle, so calm, so compassionate, but the reassurance did not come. She knew. And by her demeanour, so did we. She told us that she would call the paediatrician back to talk to us, and left the room.

I looked at Gaz, thinking how I would have done anything to protect him from this kind of pain..that's what you do when you love someone. But I couldn't protect him from this. "Please don't hope that I am not right about this. She has. Look at her eyes, darling, look at her eyes". As he looked at her eyes, tears welled in his. And then, I fell in love with him all over again, when he scooped her up from my chest, and held her to his, telling her over and over, "it doesn't matter, we love you, you will have a good life with us". I knew everything would be ok, not right away, but eventually.

The paediatrician came back in and straight away started to explain the physical characteristics of children with Down syndrome. Almond shaped eyes, low set ears etc. I nearly bit the poor mans head off, as I snapped, "Yes, yes, but does SHE have these characteristics, does she have Down syndrome?" He said, "yes, I believe she does". And that was it. Forever changed.

The midwives made us up a double bed in a vacant birthing suite next door, and said Gaz could stay the night - unheard of in this hospital, but I was grateful for their compassion, as I could not have been alone. The night started off peacefully. We were so tired, and we lay in the dark room, spoon style, with our new baby beside us. Each of us asking the other one if they were ok, periodically. Soon, the sound of Gaz's even breathing...but there was no sleep for me.

After some hours, I must have dozed off, as I woke up to what felt like the whole room shaking - I thought there had been an earthquake. It was my husbands body shaking, as he held me, his body racked with sobs. He was 54 years old when Georgia was born, and he despaired about the future, the very distant future, where he would die, and leave me to look after her alone. I just shook my head, I was in another place entirely, unable to think much more than 10 minutes ahead.

Gaz left early, to go home and tell his sisters, who were looking after our other 3 children. I was very emphatic, that he was to tell people who were wanting to ring, or visit, that there was to be no grieving, no tears, no sympathy. That she was a baby, and she was to be celebrated like every other baby. Grief was for when you lost someone you loved. It had no place when you gained someone you loved. (While at the same time acknowledging to myself that it felt very much like grief, and indeed, was....grief for the lost baby that I thought I was having, the hopes and dreams that I had for her.)

After he left, I bought Georgia into bed with me, in the quiet hour before the ward really starts jumping. It was a beautiful time, even in the midst of such despair. She nuzzled into me, so content to be in my arms, and went right to sleep, and I just drank her in.

The consultant paediatrician came in to see her a little while later, and he looked kindly at me, and said that he was there, as there was a question about Down syndrome. I said no, there was no question, she definitely had it, I knew. He looked her over briefly, and said yes, she did, a blood test would confirm it, but he could indeed see that she did. I don't think I was secretly holding out any hope, I don't think I was, I was always sure. But for some reason, this is when I finally, really lost it. I sat there while he fully examined her on the end of the bed. I was rocking back and forward like a lunatic, tears bucketing down my face, while he explained how things were going to be with our girl. How he would do some tests, and we would get the results, and then we were to get on with raising her like we would a normal child. He said he was re-assured by the fact that she seemed to have no health problems that can commonly afflict children with Down syndrome, no issues with her bowel, and no heart murmur. She did however, have severe jaundice, and needed to go under lights.

They wheeled the crib into my room, this enormous contraption, where she had to lie, naked for hours at a time, with a very cute little mask over her eyes to protect them from the blue lights. She didn't like it at all, she twitched, and fretted, and wanted to be held, but I was only allowed to take her out for 10 minutes at a time, to feed her. So much time to sit and reflect on the fact that 24 hours before, I was yet to to into labour, and thought that I was going to give birth to a perfectly normal baby, like I had done three times before, go home, and get on with raising my family of four girls. It was impossible to imagine how things could have turned out so differently.

To be continued....!