Thankyou for checking out my blog.
This post is one which I’ve written as the first of a few exploring our birth & breastfeeding experiences.
I think this is closely linked to our parenting style & our decision to peruse a Steiner Warldorf education for our daughter. This is the story of my first experience of being a mother, this is Katie’s story.
It’s a long one, and you may need tissues.
When I was nineteen I was living in Nottingham. I was working full-time in an office. I had been with my partner for three months and was renting a room from a friend. I decided to visit an NHS drop in centre as I noticed my dates were out. They did the pregnancy test and told me it was positive. The nurse bluntly asked ‘are you going to keep it?’ I knew then that I was going to have this baby even if the situation wasn’t ‘perfect’ by traditional standards. ‘Yes’ I said, as I stood up, and walked out, holding my head high.
I came home and told my partner that afternoon. His four year old daughter was in the next room. She & I adored each other, she was a very special little girl who we later found out was autistic. She had been an unexpected gift; my partner & his ex split when she was only a few months old. I knew he had found it hard receiving the news about the pregnancy, and I was worried how he would handle it this time. He seemed to take it well, I was surprised, and pleased.
The flat he was renting was not very homely. My Father kindly put a deposit down on a house for us, and by the time October came we were living in our newly renovated 3 bedroom corner house in a beautiful quiet area of Nottingham right by the River Trent & its Victoria Embankment. We had plenty of room for his daughter to come and stay, and a blank canvass that we could decorate and make our own. I loved being pregnant and was very excited when I started to feel flutterings in my tummy at the bus stop. I loved seeing my bump gradually expanding.
At my 20 week scan I was told that some sacks of fluid on our baby’s brain had been spotted. These were called ‘ascities’ and on their own did not pose a problem to our baby, and often reduced & disappeared during pregnancy. But they sometimes act as a marker pointing to a larger problem, so it was decided they would monitor us a little more closely.
I had an amniocentesis because they thought that our daughter might have Downs Syndrome and wanted a clearer picture of what medical condition she may have. By taking a sample of the fluid around the baby and testing it they could get a better idea of any additional needs she might have. It was a scary procedure but my Mum held my hand and I kept my eyes closed the whole time. I rested in a hospital room afterwards for a while. As I was tightening and tidying my pigtails in the mirror, my Mum told me she knew I was going to be a wonderful mother.
The results from the tests came back clear for Downs and everything else that they had tested for, but they decided to keep a close eye on me and do regular scans; the sacks of fluid which were still present. Katie was measuring large for her dates, and we were told that there was a possibility that she had a form of giganticism. We spent some time researching the condition in the parents’ medical library in the hospital. I contacted an on-line support group for families with rare conditions and one called ARC (Antenatal Results & Choices), which supports parents during and after the antenatal testing process.
We felt that the outlook was still good for our baby, although gigantisicm would mean she might be affected by having a large tongue. This would need to be operated on shortly after birth, as it would affect feeding and speech. She had a family who was willing and able to support her and advocate for her despite her disability. Gigantisicm also meant that she would be much larger than her peers for the whole of her childhood, but that only after puberty would she appear to be the same size as others her own age.
We had lots more scans but at the 26 week scan they saw that Katie’s measurements were not only large for her but also that she was carrying fluid around her tummy, and had the appearance of having a ‘pot belly’. I did not have an understanding of the implications of this. I called my mother whilst waiting for the bus home. She offered to attend the next scan with me. As a nurse she has considerable medical knowledge and I imagine she must have been concerned, maybe I was still blissfully ignorant.
I got on the bus to get to work one morning & the driver asked when I was due to give birth. I said that I was 27 weeks and she was very shocked. She asked if I was having twins. I now realise that I was naive to how big my bump actually was, as this was my first pregnancy and I did not know anyone who was pregnant to compare myself to. None of my friends had had babies yet so it really was the unknown for me.
At 27 weeks I had a scan with Mum and my partner present. It was in a detailed scan room. They could see everything from the blood pumping in and out of her heart, as well as the fluid around her tummy in great detail.
A geneticist from the other hospital in the city had come over to observe the scan. Along with my obstetrician and the sonographer, the room was full and warm. My bladder was full and I remember feeling sick, wishing they would hurry up. The room was silent during the scan, it felt as though they were worried, and therefore so was I.
After the scan we were led into a small waiting room. We were told by the consultant that my baby was ‘incompatible with life’.
Katie had suspected Perlman Familial Nephroblastomatosis Syndrome, one symptom of which is Wilms Tumour; a children’s cancer of the kidney. Perlman Syndrome is a cause of enlarged, hyperechogenic kidneys. It is a rare overgrowth syndrome and is inherited and carried chromosonally. The prognosis was not good; research informed us that children with Perlman Syndrome who did not have the Wilms Tumour lived to no longer than eight years before developing it. However the scan had showed that Katie had already got Wilms Tumour growing within her kidney.
The options presented to us were;
a) to continue the pregnancy. There was a risk I could go into labour at any point as her large for dates size meant that she would be the size of a full term babe within weeks and the extra fluid was heavy too. We did not know if she would survive the labour, and if she did, we did not know how long she would be able to live outside of the womb.
b) to end the pregnancy by a process called feotocide. This involved a similar process to the amino I had previously had to collect fluid; only instead of doing that, a needle would be inserted directly into my baby’s heart & a dose of acid would used to end her life. I would then be chemically induced and I would labour and she would be stillborn.
I felt shocked at being asked if I wanted to end the pregnancy. I decided to continue. I was numb. I remember standing in the hospital car park waiting for my mother to bring the car to us. By now I was very big and had trouble walking long distances. I did not know it at the time but she drove round the car park a few times, as she was trying to compose herself before I got in the car.
We went to stay with my mother, which was an hour away. I wanted to talk to someone who had been through something similar, but I couldn’t because it was only the eighth recorded case worldwide.
I was told there may have been other cases that had not been documented though. The eldest that a child with Perlman had ever lived was until the age of eight. However that child had not had the kidney tumour until they were seven. Our baby had already got the tumour and she hadn’t even been born yet.
I didn’t sleep for four days. Katie was big for her dates and I also had large amounts of amniotic fluid so, along with the fact that I was overweight as well, my appearance was of someone who was full term. I ended up staying in the house because if I went out, people in the street would remark how big my bump was, and well-meaningly ask when I was due to have my baby.
After four days and nights with no sleep I went to see my mother’s GP to ask for some sleeping tablets. She quickly and silently wrote out the prescription after my partner explained the situation.I am amazed that he managed to get the words out. There was nothing she could say, and nothing we could do.
Once I had got some sleep I realised that something had to change, as my mental health was deteriorating. I made the agonising decision to end our much wanted unplanned pregnancy although it felt as though there was no choice at all.Knowing she was going to leave us was heart breaking. But having some say over how this happened gave me some hope that I could one day heal from this.
I was told that because we were nearly at 28 weeks, my only option was to opt for foeticide, induction, labour and (still)birth. I knew that I could not go on, but also felt with every fibre of my body that this was inconceivable.
I asked my obstetrician to give me a general anaesthetic and then perform the foeticide and a caesarean section while I was asleep.He said no because the risks of major abdominal surgery to the mother were not justifiable considering that our baby was not going to survive, and the physical recovery period would be longer.
I started looking for private healthcare elsewhere. I just could not understand how I would be able to keep still (or sane) whilst seeing them insert a needle into my baby’s heart on the screen.
I imagined myself turning into a wild banshee woman, trashing the hospital equipment and tearing my own hair out. I had many nightmares about this. The image of this happening was torturous to me and the true horror of the situation slowly began to sink in.
One private hospital I phoned told me to speak to a certain doctor because he was the expert in the field. ‘He is my obstetrician’ I said flatly.I felt as though I had hit another brick wall, but within a few hours he was calling me, and the message had obviously got back to him that I was seeking alternative care.
He reluctantly agreed to do what I was asking if I signed something to say that I understood the risks to my own health.
28 weeks and 2 days
11th December 2000
The last night before the operation was awful. I laid in bed with my partner spooned up behind me. He held his hands on my tummy and we felt Katie kicking all night long.
It was a toxic mix of joy of her creation & gratitude from feeling her moving, and of desolation and desperation at the thought of having to say goodbye forever. I didn’t want to miss one minute of her short existence so felt reluctant to sleep, but I was distraught and distressed every moment that I was awake.
[One of my favourite movies is called Magnolia. This film is a mosaic of inter relating characters exploring various rich & intense life experiences in search of happiness, forgiveness, and meaning. The only way I can describe the days between her diagnosis and losing Katie, are akin to how this movie made me feel. It takes you right to the heart of pain and sorrow, and holds you there.]
28 weeks and 3 days
12th December 2000
The next morning I went into auto-pilot and became emotionless. It was as though someone had scraped away at my heart with a spoon, leaving just the cavity and a true feeling of emptiness that I had never experienced before.
On the morning of the operation we made the one hour journey back to Queens Medical Centre in Nottingham. The team had been informed why we were there and everyone was so nice to us.
We were given a ‘quiet room’ which was like a hotel room but with a button on the wall to buzz for staff. This was the room they gave to ladies whose babies had died. But mine was still kicking very hard and very strong.
I was given a gown which I was asked to put on before walking to theatre. My back and bottom were totally exposed because my bump was so huge. My partner knelt down on the floor and kissed my belly and said goodbye. I could not react to his words but only stared whilst he said his farewell. My Mum walked with me to the theatre and held a second gown over my back to protect my modesty.
She was told that this was as far as she could go and I walked the final few meters to the theatre with a fully gowned nurse. The operating theatre was shiny and bright. I was asked to lay on the bed, but I could not get up onto it.
I thought I was going to go into a pre-op room but instead I had been walked straight into the actual theatre.There were at least six people fully masked and gowned with only eyes showing. I recognised the eyes of the consultant only because of his glasses.
This was the operating table on which my baby girl was going to die, and then be cut from my body. There was no sense of celebration in having got the consultant to change his mind to do things way.
[I imagined that this might be what it would feel like had I been walking to my own execution. Morbid I know, but not all feelings or experiences are rosy, and that alone is no reason to silence oneself.]
They found a step for me. I heaved my huge eighteen stone frame on to the bed.Seven masked faces filled my view of the room. My obstetrician told me that they were going to tilt the bed to take the pressure off my uterus. The irony, any discomfort I felt was surely deserved, or had not registered as even being a feeling in the numbness which had set in.
A general anaesthetic was delivered through a cannular in my hand, and I was asked to count to ten.All I was thinking was ‘what would happen now if I just run for my life?’
I don’t remember anything else.
Katie was stillborn at 4.08pm, at 28 weeks and 3 days by caesarean section whilst I was under a general anaesthetic. She weighed 3lbs 8oz.
When I woke up she was gone and I was empty.
[Again I refer to film in reference to what this was like for me. Ever seen Kill Bill? That scene where Uma Therman’s character wakes up from a coma to find her body is not pregnant anymore….yes that’s about the long as the short of it.]
The first thing I saw when I woke was my mothers face. She was reassuring me and explaining where I was. I was in so much pain but was so hazy that I didn’t register it as pain.
The sensation of having had my abdomen sliced open was starting to register and I was in agony. I was given some morphine on a drip and the next eight hours are a blur of pain and drugs. My Mum didn’t leave my bedside. I wished I could have stayed on morphine for much longer than so was allowed.The numbness which had ensued my compliance in those moments before the anaesthetic had left me. Mum dozed next to me as I slept and gave me water through a straw when I woke.
I remember waking at one point, to find my Dad in the room. This was a surprise for me as he was having some serious health problems. I wished at the time I could have supported him through that but I could not focus on anything at this stage except just getting through the next moment.It meant so much to me that he was there, but I couldn’t say it out loud. Even breathing was agony.
Shortly after, I was handed a polaroid photograph of my baby.
The picture was of very bad quality and the flash on the camera made Katie’s appearance seem like she had grey skin and lots of black bruising on her head.
I sobbed in my hospital bed, with my Dad and one of my brothers stood there silently not knowing what to do or say. This moment seemed to last for hours.My Mum rushed in from the next room and comforted me, and put the picture in an envelope.
It was a humbling experience being nursed, and by my own mother too. I was a small child again and she no doubt experienced a cocktail of emotions. She was my rock, and I clung to her dearly for my life.
After one night in the recovery room I was moved into the quiet room which was more homely and I started to feel a little less hazy, probably because they took the morphine away.
On the first day after the operation I had to attempt walking. Having been so used to being able to walk my whole life since the day I took my first steps, this was frustrating, humbling, and I was determined to heal and grow stronger.
That day I had a shower. Many of my memories from this time are somatic in that my body remembers the sensations associated with certain events. If my body could have screamed it would.Standing in the warm water with the door ajar incase I needed my mother to help me, I could feel the scratchy uncomfortable feeling of the hard black stiches against my sad post partum sagging skin, whilst the cool draft from the open door hit my back in waves. The body remembers.
[Note: Twelve years later I discovered meditation. Yoga nidra is a guided meditation which requires the individual to move the focus of their attention to parts of the body in order to focus the mind and create stillness. During a yoga nidra session I found that when we were asked to focus all of our attention on certain parts of the body, the ones that remembered this trauma were very difficult to move on from. As I focused on the back of the right hand I felt the dull ache of the canula which had remained in my vein for 48 hours. When asked to focus on the abdomen it was not the inhalation & exhalation I focused on but the gut wrenching ache of my scar throbbing as if to say ‘hear me’.]
I experienced chronic dizziness, and at one point I opened my eyes to find at four men in white coats standing round my bed. I had double vision, and could hear my Mum talking and them replying to her, but what they were saying was not clear. I closed my eyes again and passed out. I had been offered a blood transfusion because I had lost a lot of blood. I had the option to take iron tablets for a few months instead if I wanted. I went for the latter.
I had not seen Katie yet, when the following day my obstetrician came and sat on my bed. He asked if I had seen my baby yet, or seen her tummy, to which I replied ‘no’.
He talked about how they had seen the tumour on the scan and said that her kidneys were ‘massive’. Then he walked away.
I was so angry at him that I asked for Katie to be brought into my room. I undressed her blankets and looked at her. She was naked on my bed, and she was beautiful.
Her tummy did indeed have the appearance of a pot belly, and she had a small ring of bruising around her tummy button where her umbilical cord still sat. I am so glad that I did this because his description of her, and the polaroid picture did just not do her beauty justice. I guess this was one of the first times I ever faced my fears.
I later made a written complaint about his manner because it was not the first time that he could have been more sensitive. He did reply to my complaint but never apologised for what he said.
I did not pick Katie up because I was afraid that I would damage her delicate frame. I regularly had her laid out on my bed in her blankets so I could inspect her features and take her all in. I would stroke her face and touch her thin blonde eyebrows soaking up each previous moment. Every feature was perfect from her long eyelashes right down to tiny toe nails. I was a mother.
My partners mother came to see her, and in quiet awe we sat, as she touched her hands and stroked her face too. We were in the presence of greatness and tragedy all at once.
I regularly asked everyone to leave the room, and when I was alone I would kneel on the floor with my head in my hands and sob loudly for a long time. The grief came in waves, every day the gaps between these crying outbursts became a little longer.
I spent five days with Katie in hospital before her funeral. She was kept in a freezer room opposite my room. When I buzzed the midwife, she would bring Katie to me in a Moses basket. She was wrapped in a blanket. I never dressed her.
My best friend came to stay with me in hospital. She slept on the sofa bed in my room and helped me to get up to go to the toilet in the night.One day we ordered pizza to the front door of the hospital, and she wheeled me to the main entrance in my dressing gown to collect our dinner. It was fun being with her there and I needed someone who could be sad with me but who could also lift my spirits.
I couldn’t bring myself to take photographs especially after the traumatic experience if being handed the first polaroid. However my Mum did and I’m so glad now that she did. She now has one A4 size framed photo of her, sitting holding Katie in her arms and looking at her. She described how she felt the grace of God guide her through that time as she was very calm and collected almost all the time.
The hospital chaplain blessed Katie in my room with my mother and my partner present. It was short and sweet and I was appreciative of the sensitivity and compassion that the Chaplains & nursing staff showed me.
On day five after Katie was born, she was moved down to the hospital morgue where she was collected by the funeral directors affiliated with the hospital. I left hospital that day and we visited her a few days later at the funeral directors, before her funeral and cremation a few days before Christmas. I knew she was gone but knowing where she was and whom she was with at all times became immeasurably important.She was still as gorgeous as ever, but her skin was darker and the delicate shape of her head had changed, mainly because the plates that formed her skull were so soft and had sunk just a little. Her coffin was white with a gold plaque in the lid with her name and date of birth engraved on it, I stroked her face and button nose once more before saying a final goodbye.
The tiny chapel was not very full. I didn’t want many people there. As the hearse arrived at the crematorium chapel the funeral director asked my partner if we wanted to carry the coffin ourselves. This was unexpected, and threw us a bit, as we were just trying to imagine ourselves making it through the service.I had my close family, my older brother and my partners’ parents. My partner read out a poem and the vicar read out a few pieces too. It was very surreal.
We stayed with Mum for Christmas. We did the best we could at the time, wore paper hats out of crackers, ate a roast cooked by my Mum, and observed other typical seasonal traditions.
My mothers parents visited us in-between Christmas and New Year. My Granny said that they were sure that I had done the right thing in following my instincts and that I’d had no choice. It took me a long time before I was eventually able to think about Katie without feeling hugely guilty so my Granny’s gently spoken words and Grandpa’s tight bear hugs meant so much and still do.
A local midwife visited me at home for a check up as my wound had become infected. That in itself was such a sadness having to explain what had happened, as I had no notes and my green pregnancy book was not given back to me by the hospital.
I remember feeling sad that the needle mark on my belly where the injection had been administered had healed, and the pin sized tiny scab had disappeared. Eventually I came to love my c-section scar because it was one of very few things that remained to remind me that Katie was real.
We went home in January after New Year once my c-section scar had healed some more. I had a tiny wooden urn made for her ashes but it turned out to be too small and I ended up buying an adult sized wooden cube instead.
I later had a beautiful pencil portrait of Katie commissioned by a wonderful artist named Heather Spears
When I later married, having separated from my partner a few months after I lost Katie, I wore babyloss awareness ribbons in her memory and invited my loved one to do the same.
On the first anniversary of her passing we released thirty three pink and white balloons at Victoria Embankment, each with a message from friends and family who had felt able to contribute. Some had written to us, others directly to Katie, and some offered simply their favourite poem or a reassuring verse.It was one of the first times I witnessed my parents actually speaking since they separated when I was ten years old. I felt intense gratitude for this blessing.
Every year since, I have released balloons and had a cake made. One year I visited some old school friends in Portsmouth, another year I simply lit sparklers in the garden.SANDS is a charity (Stillbirth & Neonatal Death Society) that supports family members living with the loss of a baby. At Christmas we attends SANDS Christmas Remembrance Services and hang Katie’s bauble on their Christmas tree alongside all the other decorations, each one representing a little soul.
Other touching memories include receiving small laminated colour copies of the few photos I had of Katie, from a dear friend in Manchester, these were the days before I owned a photo printer & laminator myself. I remember wearing a SANDS pin on my coat and being spotted by another SANDS Mum. Neither of us with children in tie she approached me at a train station, pointed to my pin, said ‘I have one of those’, smiled, squeezed my arm & went on her way.
I have reflected on the healing and growth of self that occurred as a result of being Katie’s mother. I take responsibility for the decisions I made, and have been able to find some peace about what happened.
This is partly due to the amazing support I received from my own mother, and my support network of friends and other relatives.
But mainly this is because of Amelie.
Check out this Goyte
Video for song called Bronte – love this animation and the dreamy letting go lyrics
“Now your bowl is empty
And your feet are cold
And your body cannot stop rocking
I know it hurts to let go
Since the day we found you
You have been a friend
And your voice still echoes
In the hallways of this house
But now it’s the end
We will be with you
When you’re leaving
We will be with you
When you go
We will be with you
And hold you till you’re quiet
It hurts to let you go
We will be with you (No)
We will be with you (Oh)
We will be with you (Oh, no)
You will stay with us”
Here’s a comment my Mum sent me when she had read my post;
“I also remember that you were worried that when Katie was born you would be unconscious and there would be no one there to hold her. Do you remember that we agreed I would be in the next room and hold her for you? I wanted to see her and hold her, so I did, and she was so pretty, pink and warm to hold just after she was born, I loved her instantly.
The next day, I held her again. I remember how hot it was in your little room, the heating was turned up high and there was no way to adjust it, the windows only opened a crack, and you wanted the door closed for privacy. It was sweltering and I was so hot and uncomfortable. When I picked her up I remember how cold she was, it was like a very special gift she gave me, she cooled me down and I held her close to me as we had this exchange of love and warmth. I held my face against her face and she gave me this extraordinary coolness and sense of peace, and a sense of quiet. It was what Granny used to call ‘a moment out of time’. There was no time, no room, no pain, no distress, nothing, just me and her, together in the whole of space and eternity where nothing could harm us. Everything else had fallen away. When I think of her now I get this wonderful feeling back, I remember her at other difficult times on my life, and she still cools me and calms me.
There cannot be anything much worse than losing a child as a baby, or, worse than standing by watching your daughter lose her baby, when there is nothing to do but stand and stand fast and then stand fast again. I love you so much Rosie, you are a beautiful shining star in my night sky. You are my river in a time of drought. Love and hugs and then some more, Mum xxx “