Kia con bu’o’m vang
Xoe doi canh
Tung canh bay nam ba vong
En ngoi xem
There the yellow butterfly
Spreads its wings
Takes its flight
We contemplate it
– Vietnamese Nursery Rhyme
The Baby Orphanage is home to twenty eight children, the youngest a newborn, the eldest four years old. The orphanage gates are tall, wide and baby blue, mostly rusty and uncared for, opening to a courtyard, wide and sunny, with a few trees and plants. Bicycles and motorcycles are strewn in the shade of the trees. In the centre of the courtyard are the stairs leading up to the orphanage. The entrance is open to the elements, as is most of the Orphanage, and no physical barrier holds these children in. Walking through these gates, I am treated to a welcome like no other in the world. Tiny excited figures come running, screaming with excitement, attracting the attention of the other children who run in this wake. At the top of the steps they jiggle, shout, dance on the spot and leap into my outstretched arms.
Giang is first into my arms, a beautiful little girl of two or three, big liquid brown eyes, soft hair like a baby and flawless latte skin. I lift her onto my left hip. Lan Chi is next, a little tomboy of three or four, gorgeous plump shapely lips, petite nose and equisitely shaped eyed, in blue clothes and lilac flowered sandals. She swings herself into my free arm and onto my right hip. Gai runs to me, a girl of two or three, with her round face, sparkling smile, arms stretched open for soft cuddles and a giggle like no other, she wraps her arms around my right leg. Nhu takes my outstretched hand, smiling shyly, a quiet and calm girl of three or four, her elegant eyes reflecting her long elegant limbs, small string of tiny beads around her neck, she loves to write and adores to be praised. Ngoc appears, a strikingly beautiful girl of two or three, pale skin, distinctive eyes, revealing an ethnic makeup from beyond Vietnam’s borders, into wider Asia. She places a soft hand on my left leg. She is followed by Chi, girl of three or four with a sad and worried face that melts into a beautiful free smile at the tiniest kindness, often sharing kindness herself in consoling other tearful children. I buckle under this pile of children and Chi runs to us as we all giggle, tickle and hug.
On other days I am greeted by the boys, arriving to find them keeping watch at the orphanage gates. First into my arms is Ca’an, a caring and warm boy of four, beautiful big smile, from one of ethnic hilltribes, he loves to be lifted and cuddled, always with a protective eye on his younger brother. I swing Ca’an onto my left hip as Loc emerges, king of the jungle, a four year old boy with hydrocephilis, a little boy who loves to talk, laugh, play and sing. He runs to me, already talking, taking my hand, tapping on it and chattering to greet me. Tu runs out to see what is happening, a naughty and mischevious little boy of three or four, always the one to knock things over with flying limbs, to break things in his hands with overexcited curiosity, a boy with a large vertical scar on his belly left by surgery to save his life when he was very small. Tu does not want lifted, instead he runs energetic circles round us as we gather. Trang appears from behind a pillar, running to me faster that his tiny legs can carry him and he stumbles just as I sweep him up into my free arm. A beautiful, tiny, strong little boy of two or three, always in orange, baby huge wide eyes, always sparkling with excitement, a face that bubbles in anticipation of fun, I lift his tiny weight easily and throw him onto my hip. Not yet through the gates, I am absorbed into a tiny huddle of excited chatter and affectionate cuddles.
The children wear little outfits that look like pyjamas. Clothes are shared amongst children of similar size and come in sets of top and bottoms, always matching, with a child’s name written in pen on the top. Usually there are two or three names, the first crossed out, the clothes passed down. Always the legs are too short, revealing ankles and bellies. To my left, on a washing line in the courtyard, I see tiny matching sets of clothes in every colour swinging in the breeze, along side a few threadbare towels. There is no underwear or cloth nappies, on the washing line or on the children. They are a cute sight in these little outfits, pants far to short and clearly for a child much younger. Even so, the small sizes are far too big for their malnourished bellies. The children hold the waists of the pants as they run, to stop them falling down.
The Orphanage is mainly made of a large open space, around which there are doors opening into small bedrooms and a small classroom on the left, baby rooms directly ahead and an eating area, kitchen and office on the right. The bathrooms and showers are to the back left and are open to the elements. There are signs that children live here. The open space has some rusty and faded playgear, an old slide, climbing frame, seesaw and toy animals, child sized chairs and cushioned floors. The walls are chipped beige paint and colourful painted murals, jungle animals run through green trees, butterflies flutter by under yellow suns. It is bare, basic, stark even, but it is not soulless. The soul of this place is found in its small pyjama clad lives who shelter here. Warm skin, beautiful round eyes, shaped at the corners, high cheekbones, happy giggles and tiny cuddles breathe warm life into this space.
We walk into the orphanage and the children leap from my arms to share in the oranges and bananas we have brought for them. Children are swung hugh in the air by volunteers, a cupboard of toys is opened and the Orphanage is filled with the excited laughter of children and the colour of toys and building blocks. Music begins to play as the children run to greet all the volunteers, to find a coveted space in arms or on a knee, or to be trusted with a camera or the key to the toy cupboard. We have to lock the toys we donate away whilst we are not there, else things go missing. I find this so sad. These children have nothing, who would take a few pitiful toys away. I ask but no one seems to know where missing things go. As saddened as me by it, no one wants to know. The children are unperturbed, used to having things taken from them. The sound of their laughter bounces around the orphanage. As the atmosphere settles into the beat of a steady rhythm, I negotiate my way through cuddles and coloured blocks and I walk ahead to the Baby Rooms.
The Orphanage has two Baby Rooms, opposite the entrance. I kick my shoes off before pushing the door open, my sparkly flip flops falling into a small huddle with the dark sandals of the Mothers. Some of the toddlers and children wander into the baby rooms, their presence signalled by their tiny shoes left hapharardly outside the door. I guess bare feet are intended to keep the baby room floor clean for little hands, although I do not find babies crawling or playing on the floor, not on my first day there or any day after. There are two baby rooms, on the right are newborn to maybe seven or eight months old, on the left seven or eight months to about eighteen months, when the babies join toddlers and children. Both rooms are well lit, clean, although very basic. Each has one Mother, Mae, caring for five or six children. Mae looks after the babies laundry, food and bathing, so are busy and not always in the baby room. Usually I would find babies alone in their cots, alone in the room, alone in the world. Some of the cots were made of stretching material and although a little grubby seemed adequate at least, even comfortable. Other were made of rusty metal bars and wooden bases. These were not a baby’s cot or a child’s bed, they were more like cages. The tiniest newborns lay on a double bed, away from the edges, swaddled under layers and layers of tiny clothes, far too many for the tropical heat I think, but there they lay, under rows of tiny blue mosquito nets.
There were no toys in the cots, the baby room toys were tucked away on an out of reach shelf. I searched for toys, thinking there must be something, knowing that I had brought small rattles myself. I found a stash hidden away out of reach on a high shelf and happily passed these out to the babies, giving them something to have in their cots, for fun, colour and stimulation. The babies stared blankly at the strange objects I had put in their hands. They stared blankly at me when I showed how the toy was played with, shaking rattles, cuddling bears. They looked blankly at me when I offered them the toy back, did not reach out for the toy and did not react when I again put rattles in their hands and bears in their cots. I realised that these babies had never seen toys and had no idea what to do with them. When I returned the next day, the toys had been taken from the cots and put back on the high shelf. I got them down and handed them out again. This ritual was to continue for weeks.
The second baby room is home to six older babies, still round bundles but less tiny, at least physically. Lying in cots is replaced with sitting, bottles replaced with spoons. Any affection afforded to them for their baby cuteness seems to be left in the smaller baby room and the atmosphere here is less kind, the Mothers less loving and I am less welcome. In this room babies are potty trained, placed sitting in buckets and tied with rags to the bars of a cot to hold them upright and keep them from escaping. Some ingenious toddlers had learned to move with the bucket still attached, using their feet to propel themselves and sliding the bucket along the floor. We saw their understandable drive to break for freedom, bucket still attached, but the Mothers wanted to keep track of the children, so tied to the bars of the cages it was. This method unsettled me, the children did not look confortable and were often distressed by the use of restraints. If I ever found a tied child crying I would release him or her as this indicated to me that they were being held more than just upright by the rags. It was worth the grumpy looks of the Mae in my direction to respond to a baby’s discomfort and set a child free, if only for a few minutes. Within time, as I learned how the Orphanage worked, the demands placed on the Mothers and the duties they should be performing, I became frustrated with tying of children to bars. Whilst customs and practices of child raising vary from culture to culture, it became clear to me that this use of rags and bars was unacceptable here too. I made my feelings know without a word of english or vietnamese, simply untying the children, sitting with them till they had used the potty, then cleaning them and putting them back in their cots, or on the floor to toddle and play with each other.
Without a doubt, the diagnosis, from the first whisper of the word to the staples it left across my broken body and the breathless fear it placed in my broken heart, the illness, from the early discomforts to the crippling pain, the loneliness, as my world evaporated around me to be replaced by doctors and hospitals and pain and endless bad news, the loss, so massive I still cannot speak of it, this experience has changed me.
I am fundamentally a completely different person to the girl I used to be. I was told that there is a before and after. This is true of both life and in my case, of self. I can barely recall the girl I used to be. I see her in photos, I don’t recognise her. I cannot remember what it felt like to be in her head. I have dreamlike memories of what it felt like to be in her heart, before it was broken into a million pieces, shattered and lost, and became mine.
Through this awful, awful year, my gentle heart was broken irrevocably. Broken, beaten, stamped upon, suffocated, my heart suffered the same fate as my body and mind. The pain, worry and fear was unrelenting, not for a moment, an evening, a night to sleep would I be allowed to rest. The bad news continued to rain down in a hostile thunderous storm conjured by the anger of all the Gods and creatures of centures of human belief and mythologies. It didn’t seem possible that such disaster, such violent catastrophe, such unjust pain, could be the work of just one malignant force. Quite simply, it seemed the universe with all it power, it manipulation of force and chance had come together and was making one thing very clear. I did not belong here.
I cried every day, and every night, for a year. My tears were with me in every conversation, every phone call, every scene change. I took to wearing sunglasses, to hide the tears that poured down my cheeks as I sat in parks on benches aimlessly during the day, watching dancing children and oblivious adults pass by me. Every so often I would see a perfect swollen belly, a new life growing in a glowing, happy mother and I had to look away.
Even now, I can still taste the pain.
I cried rivers of pain, loss, fear and loneliness. As I became more exhausted by treatment and more resigned to solitude, my tears became silent, but still they poured down my cheeks, day and night. No one would ask why I was crying.
Im my appartment, a haven I used to love, alone in the evening by candlelights, my sobs became more and more desperate, turning to screams. Often my neighbour would appear at my door, herself in tears too.
In hospital my sobs instinctively turned to wails, wails to desperate, screams. For the first few nights there, trapped in the dark, I sobbed and screamed with every ounce of pathetic humanity I had left in me, with every laboured breath. No one came.
In July 1978, less than two years before my birth, the first baby conceived by IVF, in vitro fertilization was born. Louise was born in England. More than three million children have been born using IVF in the years following. Six years later, the first baby was born having been conceived using IVF with an embryo that had been frozen. The embryo became a baby girl named Zoe, born in April 1984 in Melbourne. The same year in Australia a child was born with the participation of two woman, one provide an egg as a donor and the other carrying the child in her womb. More than three million children have been born in developed countries using IVF in the years following.
Cryopreservation, where cells or tissue are frozen to subzero temperatures to a point where all biological activity is paused, plays a central role in modern IVF procedures. Oocytes, or eggs from a woman, can now be frozen, as well as embryos and sperm. Oocytes are more difficult to freeze and thaw due to the large amount of fluid in the oocyte cell. When fluid is frozen, it can expand, causing damage to the egg. A method of freezing where ooctytes are flash frozen using liquid nitrogen, vitrification, has been developed in recent years, to allow cryopreservation of a ooctytes to be a feasible part of the IVF process.
Oocyte vitrification has become a new method for fertility preservation in young woman who may no longer have a plentiful supply of eggs when she plans to have a family. The method is newer than freezing of embryos, which has been shown to have comparable success rates to fresh embryos, but emerging results are encouraging. The first baby conceived using a frozen egg was born in 2002 and since then the technique is emerging as a means of hope for young woman who may see their fertility compromised by necessary treatment or early menopause. Early studies have demonstrated that frozen eggs may result in a pregnancy rate equal to that using a frozen egg.
At last, some good news.
In March 2008, I was advised to have radiotherapy in addition to surgery as part of my treatment, to improve my chances of recovery. Radiotherapy to the pelvis will, without intervention, cause a woman’s ovaries to be damaged beyond recovery, so that she will both start early menopause and no longer produce eggs viable for a pregnancy, surrogate or otherwise. As a result, a select few specialist fertility surgeons are now are able move ovaries prior to pelvic radiotherapy, out of the intended field of radiation. Initially this was an attempt to avoid early menopause, but has the happy side effect that a woman may well continue to produce eggs, which can then be collected using an IVF procedure, to conceive a child.
Prior to this, I had read of egg freezing in news stories, but only in the hypothetical context of a healthy woman choosing to freeze eggs then pursue a career and adventurous life before having children later in life, after her natural fertility had reduced. I had no idea that freezing of eggs could offer a lifeline, literally a lifeline, to young girls diagnosed with life changing fertility relevant conditions. I was soon to become one of those girls.
My doctor told me that egg preservation was not necessary for me, as we would move my ovaries and therefore I would remain fertile and could just do an IVF cycle when I wanted to have a family, putting the embryos in a surrogate. This is true, but given the amount of absurd and unlucky things that had happened in the weeks prior, I was not soothed by this promise. As always, this path was not certain or guaranteed, just likely, and given the masses of bad news and luck I had felt in the preceeding weeks and months, I was not confident of landing on the most likely side of the line. My doctor happily referred me to a fertility specialist, in one of is many valiant and generous attempts to get me willingly agree to treatment. I saw the fertility specialist, a private doctor, the same day, while most cases wait three months to see him. As was to happen often in this time, I was the interesting case, a young girl, an unusual patient. I resented this as it just reminded me how extra unlucky I was to be the unusual one in statistics that said my case should not happen often, but it is true looking back that this very fact allowed me good access to medical professionals, personally interested in me and my case. Anyway, I went to see the Fertility doctor, he said sure lets freeze some eggs but maybe I should freeze them somewhere else, have I ever been to the USA, sure he’ll move my ovaries and while he’s at it he can freeze some ovarian tissue, just because he can. What, now?
Well, I would be freezing eggs with the intention of using a surrogate. Surrogacy is more common in the US than France and Switzerland where we were based, therefore we had to decide where to freeze them. IVF has to be timed with a natural cycle and can only be started on one or two days a month. We would have to wait for the appropriate day, so a delay of up to a month was possible. Usually this is no problem, but in the case where the IVF is being done for fertility preservation before urgent treatment, a delay is not good. I was very fortunate that the illness I has was considered slow enough developing, so that it was reasonably safe to consider a delay by some weeks. In some similar illnesses there is not a day to wait and no time for any preservation of ooctytes or embryos, or hormone treatment of IVF is likely to fuel the illness so cannot be used. For me however, a short delay and hormone treatment was a safe possibility. We did a blood test and realised that we could start a cycle that very day. There was less than ten percent chance this would have been the case. At last the statistics and my tendancy to be in the unusual case was starting to work in my favor.
My mind was already blown to new realms of normalcy and my doctor was finding this all very interesting and not in an average days work, so we planned an international cross continental IVF cycle. I would have the first part of the cycle with him in Europe, once the eggs were almost ready to be collected I would jump a plane to San Francisco, have them collected and frozen there. My doctor in Europe had contacts at a fertility clinic in San Francisco and was able to coordinate the efforts. The doctors in the US clinic were, for the record, amazing. They were flexible, positive and willing to work with me in this way. I had spent the last seven years talking about easygoing, smart and kind California life and my descriptions were coming to life now.
So I embarked on an IVF cycle. I have read descriptions of IVf as being difficult, stressful, uncomfortable, almost unbearable, but in truth, I found it easy. I had a hormone injection every day for about a month, the drugs come in syringes which I kept in my fridge where the food had previously been, I did the injections myself and really, its a tiny needle. Yes I felt it, yes it left some fairly impressive bruises, but with a little perspective, it was not painful or difficult. For the last couple of weeks I had a blood test every second day, which again is not a big deal once you get used to it, it was quite nice to get out for a walk really and if anything it encouraged me to eat and drink a little once I realised that my blood wasn’t going out of me if I was dehydrated. So we monitored the development of the follicles containing eggs using my hormone levels and a couple of ultrasounds, then once we anticipated they would be ready for collection within a week, I booked a flight to San Francisco for the retrieval.
My hosts and friends in San Francisco, Bryan and Whitney, and Bryan’s sister Tiffany who arranged for me to stay with them, deserve a story of their own. For here I’ll stick to the story of snow.
So, I arrived in San Francisco on a Saturday. I went to the clinic the next morning for blood tests and an ultrasound. My doctor in Europe had monitored the development of a number of possible follicles and eggs. All eggs have to develop at the same pace as there is a small window where an egg can be retrieved and used, but the final stage is prompted by a hormone injection, exactly thirty six hours before retrieval, so all must be collected at once. If an egg is underdeveloped it will not fertilize, if it is over developed it will be spontaneously released before it can be collected, or will not fertilize when collected. The process of IVF is one of monitoring and adjustment, to allow a number of usable eggs to be collected at once. When I arrived in San Francisco I had thought that there was perhaps four or five potential follicles developing in each of my ovaries, as this is what we had seen in the previous weeks in Europe. On the first day I saw a doctor in San Francisco, he ran the tests then told me from what he observed he thought there would be at best four or five eggs, most probably two, possibly none, and that in this case he would advise abandoning the cycle completely when there was no time pressure and careful consideration of whether the financial costs and potential false hope of a very small number of eggs were worth it in a case where time did count. I was devastated. This was a problem I had not anticipated and I had anticipated all the problems in the world it seems and I was just exhaused with things going against me.
I decided to go ahead anyway, as there was no other option except to give in, something I just could not do. My hormone doses were doubled and we carried on, till the retrieval was schedule for the following friday. We did the massive hormone injection thirty six hours before and I went for the retrieval. Bryan came with me and I took my white bear. For the procedure I had a sedative, I think because I was shaky they gave me enough that I don’t remember anything for the half an hour it took. As I came round, Bryan popped his head round the curtain smiling as always. “It’s good news”, he said, “do you want me to tell you?”. “Yes” I answered before he had finished even asking. He answered, in his soft, kind, lovely deep Californian voice, “Nine. You’ve got nine”.
I don’t remember what I said. I know I was elated. I had been desperately hoping for five, the best I had been told to expect. At last, my body and I had got something right. Not only right, we had kicked medical ass. The embryologist came to see me and said I had seven excellent quality eggs and two a little less mature but still very strong valuable.
Now the good news was just raining down like gold.
He gave me a photograph of them taken through a microscope and predicted an eighty percent chance of a pregnancy with them. As he drew his finger around the circles he said with a smile, “You could very well be looking at your future children there”.
As we left the clinic Bryan suggested a drive around San Francisco. I asked for the Golden Gate Bridge and made him drive us across one of my favourites places in the world on that beautiful sunny day twice. Twice for twins.