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Susanna's Story

"I had a little girl. Her name was Susanna Kate.
Susanna was born on Friday 18th October 1996 and passed away on Sunday 22nd December 1996.
She was laid to rest on Christmas Eve 1996.

She had a little round face with beautiful clear, soft skin.
Her two little eyes were the darkest of blue and she had long eyelashes.
She had black hair and quite a lot of it.
Her little hands had long fingers, tightly clenched together and overlapping.
She had the cutest little feet. She had a little birth mark on the sole of her left foot.
She had a little pug nose and the prettiest little lips.
Her cheeks were quite chubby and very, very kissable.

She would lie and look around with her big dark eyes.
To look at them just melted my heart.
She’d clasp her little fingers around mine and hold on so tight.
To tickle her feet would make her curl her little toes.
Her frowns would bring on the cutest wrinkles on her forehead.
Her smiles (though only wind) were the most beautiful smiles and she had two little dimples.
Her cries, although not loud, would break my heart."

After 5 long years of trying for a family, I finally found myself pregnant. Our excitement and elation was quite incredible. We just couldn’t believe it. I worked for a Doctors surgery and did pregnancy tests all the time, but when I did my own and it was positive, I couldn’t believe it and had to have a colleague confirm it for me.

This little one was always destined to be a very “special” baby, she was our first, she was long awaited and she was a Trisomy baby.

I had a “perfect” pregnancy, no morning sickness, just great anticipation and excitement. My routine ultrasound scan, done at 18 weeks, confirmed a viable pregnancy, but it didn’t quite match my dates, so it was suggested I have a repeat scan in 1 weeks time. On my second scan, the radiologist couldn’t detect a joint on the baby’s finger. I thought “So what?, who cares if it’s missing part of it’s finger?” But the radiologist explained to me that this could be a marker for Downs Syndrome. He also detected choroid plexus cysts, which were also a marker for Downs. We were sent to Melbourne for a specialised scan and to consult a Specialist.

We arrived in Melbourne the night before our appointment. Before I went to sleep I felt, and saw, my baby move for the very first time. I was 20 weeks pregnant.

The doctor’s explanations touched on some common abnormalities and he even mentioned “Trisomy 18” and told us it was fatal, but I didn’t even listen to this as I’d never heard of it before and I was convinced that if there was anything wrong it would be Downs. We discussed Downs Syndrome as being the most likely abnormality, if there was one, and I was quite taken aback at his attitude to terminate this pregnancy no matter what the abnormality.

The third scan showed up the choroid plexus cysts, a thickening on the back of the neck, it actually found the digit that our local radiologist couldn’t find, but then it couldn’t find a different digit. The baby was small for dates . We were told that the chances for Downs Syndrome were 1 in 10 and an amniocentesis was performed.

We left the hospital quite confused and naturally upset. All along I’d told myself that everything would be o.kay. I never believed that there would, or could ever be anything wrong with my baby. On the drive home I had plenty of time to think and to come to terms with what we had been told and we both agreed that we didn’t care if this child had Downs Syndrome, we would love it no matter what.

Two weeks later, I phoned the hospital for the results. The doctor came on the line and said “Sue, I’m sorry, it’s very bad news. Your baby has Trisomy 18. It is fatal. All babies die. I advise you to terminate as soon as possible.

We went home believing we had to terminate this pregnancy. We talked... we cried. Then all of a sudden I could feel those familiar little prods of life inside me and I decided there and then, that this baby is alive and while it’s heart is still beating, I’m going to give it every chance possible.

I phoned the hospital back in the afternoon and spoke with the Doctor and asked for the sex of my baby. I was told that I was carrying a little girl. From that moment on I called her “Susanna”.

My own Doctor X was sure that the correct thing to do would be to terminate. I don’t think he was happy with my decision to continue, but I also admit that I feel his point of view was due to the fact that he knew very little about this syndrome. There was only one person who actually told me that to continue was an option and that was Doctor Y (another of my Employers) who later proved to be invaluable.

Then there was the job of telling our families.....that is a very difficult thing to do, when they have been right beside you, and praying for you for many years to fulfill your dreams. We received a lot of support from family and friends, and some work colleagues.

And so began our long wait.

I would pray every night that they were wrong. I would lie down every day and wait with bated breath for her to move and only when she did, would I sigh with relief. It was a very anxious and worrying time. Not knowing if she would make it to term. Not knowing what the future would bring. Not knowing how the birth would go. Dreaming of the “normal” baby that was not to be.

I found the only way I could cope was to write down all my thoughts and feelings. Sometimes I would write them as a letter to Susanna. I guess we were lucky, as we were given some literature on this condition and therefore we understood a ‘little’ about it. I would read and re-read this information over and over again. I would search magazines and papers looking for stories of similar experiences - I found very few.

July 4th, 1996

So now we look forward to the rest of this pregnancy with excitement, trepidation and fear.
I bless every day I feel her move inside me.
Only God knows what the future will bring but we’ll face it together with strength and love,
a lot of prayers and always the hope for a miracle.

When booking into the hospital, I informed the Midwife of my condition and found her to be very supportive and understanding. They knew very little about Trisomy 18 , but she made the effort to get some information for the staff, and I also contributed what information I had. They made me think of what options I had open to me. It gave us the chance to decide on what level we wanted to care for our baby and what intervention we would allow. We decided that we wanted to give her every chance possible, but we did not wish to prolong the inevitable. In other words we wanted her to be comfortable and happy, but not on life support etc.

My evenings would be spent sitting on the couch with my belly exposed. I didn’t want to miss a single movement. I would watch and feel this fragile life inside me and marvel at the love I could feel for such a small being that wasn’t yet born.

Because of the position of the baby, and also because of my Doctors concern, a Caesarean Section was planned at 38 weeks.

October 17th, 1996

Tommorrow we’ll be parents one way or another.
Tommorrow will tell a thousand words.
Please God let tommorrow be a happy day.

On Friday October 18th,1996 at approximately 1.15 p.m. our little girl was born. She weighed 1990 grams (4lb 6oz). I had a epidural, and my husband was present. I heard her cry as soon as she was lifted from me and it is a sound that will remain etched in my mind forever.

They took her away and returned to tell me that she was having difficulty breathing. She was lovely and pink, but every time they took the oxygen away she would turn blue. She was taken for a chest X-ray, which was essentially normal, and then taken to the Nursery. I waited in recovery for about 15 minutes then they wheeled me back to my room, where I was met by my Mum, my husband, Dr. Y. and Fr. Eric. Our little girl was baptised “Susanna Kate” in my hospital room with these people present. I was later to learn that they didn’t think she would would survive the wait for me to return and if it hadn’t been for Dr. Y keeping oxygen up to her, she wouldn’t have. The local Paedictrician arrived and told us it was very grave to expect the worst. His manner left a lot to be desired, as did his attitude.

The rest of her first day was with just a little more drama. She did turn blue on a few more occasions, but was “pinked” up by oxygen, administered by my husband mostly, and a nurse on one other occasion. After that she did it all on her own.

She was given no special care.. no humidicrib.. just a cot beside my bed. The oxygen was left in my room for a couple of days, just in case, but after her first day she did not need it again.

Attempts at breast feeding were unsuccessful and she was given a bottle. I wasn’t to know, but this wasn’t that successful either. I had no idea how much a small baby should drink, and the information I was given was incorrect, so I thought she was doing very well, when actually she was doing quite poorly. One night nurse, who would take her to the nursery when she wouldn’t settle, would spend hours trying to feed her. To my knowledge she is the only one who tried and I will always be grateful for her assistance and perseverance.

Most days were spent trying to feed her and calling for nurses to bring bottles etc. The nurses spent very little time with me, in fact one day I didn’t see anyone all morning -remember this was my first baby and I’d just had a Caesarean and was quite sore.

On day 5 we look her home (as I’d always believed we would). She weighed just 1780grams (3lb ?) Our first night at home was very anxious but passed without incident. She slept very well ....we didn’t!

Her feeding was very erratic and difficult and because we could not find a teat small enough, we resorted to getting a “possum” bottle from the veterinarian. This worked quite well - for a time.

October 26th 1996

Our little girl is 1 week and 1 day old today - a far cry from not surviving pregnancy.
I know we may have a long road ahead of us and a lot of heartache, but what is important is NOW.
We are enjoying her immensely. We love her with all our hearts.
She is so beautiful. I wouldn’t change a thing about my decisions, I know they were right.

The Maternal Child and health nurse would come each Thursday and weigh her. She proved to be an invaluable friend at a time when I needed her most. On 7th November she’d put on 20g of weight, on 14th November 60g, on 21st November 90g and on 28th November another 40g - to finally weigh only 140g less than her birth weight. But by December 5th, she’d lost 50g and I knew that things were not working. The hospital midwives would then come to our home and oral tube (gavage) feed her a couple of times per day and I would try and bottle feed her the rest of the time. This worked for just a few days and then they had to come 4 times per day to feed her. I would still offer her bottles, but she either wasn’t interested, or just simply couldn’t drink them.

On December 11th we visited the Paediatrician who very rudely statedto us “Looks like now you’ve got her, you want to keep her?”. This was her first real check up and he noted that she had a heart murmur, which was probably a hole in the heart. That is all we know of her actual problems, apart from the obvious and “classic” clenched fists and rocker bottom feet, no other tests were done or even suggested. A naso-gastric tube was inserted later in the day and we were instructed as to how to feed her via this tube.

She seemed to go ahead quite well then even though the tube annoyed her as it was strapped to the side of her little face Her next weigh-in was a success with a gain of 60g to weigh 1990 g (just 90g short of her birth weight).

December 22nd, 1996 - Sunday

This started out different from other days. How different I could never have predicted.
Susanna slept well the night before and we actually had a bit of a sleep-in till about 9.00 a.m. Most days I would get up and feed her, put her down and then get myself organised. But this day after her feed, I just sat with her and watched her. I sang Christmas carols to her and some other little hymns that my Grandmother used to sing.

Later in the day my sister called and marvelled at how bright and alert she was. She’d never seen her looking so good. She was lying there and kicking her little legs and looking around.

She had her last feed at about 9.00 p.m. and was lying in her pram, not asleep, just lying there. We wheeled the pram into our room and she was sick. I changed her clothes and wrapped her up again. I got into bed and cuddled her into me, as she was a bit upset. The next thing I noticed was that her eyes were strange, I can’t describe what they were like, but it was something very different to normal. Then she sort of coughed and stopped breathing. I woke my husband and he pulled the tube from her nose.

Our little girl never took another breath.

We tried to help her to breathe, but it wasn’t to be. It was 10.30 p.m. She was 9 weeks and 2 days old.
She was buried on Christmas Eve. It was a sunny day and her service was beautiful.
Our Priest likened her life to that of an apple blossom and I don’t think there is one person who was there that day, that will not remember our beautiful daughter every time they see a blossom of any kind.

December 24th 1996

Dear Susanna,
We lay your tiny body to rest on this day, Christmas Eve.
You spent 9 weeks and 2 days in our loving arms.
You fought so hard to be with us.
You were a brave and courageous little girl who touched our hearts and the hearts of our family and friends.

You bought your Daddy and I so much pleasure in having the priveledge to know you, to love you and to admire your strength and we know you were our very special gift from God. You gave us a special gift too and that was the joy in being your Mummy and Daddy and being able to love you so much. He gave you to us to love and to cherish and your time with us, although short, was the most precious of our lives. You’ve left us many memories to treasure and you will be in our hearts forever.

He took you to His kingdom at a very special time and He must have thought you as special as we did to take you at this sacred time. Darling remember that we love you and we did our best. Our arms may be empty, but our hearts are full. Sleep peacefully Poppet, and fly with the Angels in Heaven.

Merry Christmas.
Love from your Mummy.

I was told that all children with Trisomy die.

I was also told that there were no living Trisomy children ‘anywhere’.

That information is completely wrong and inaccurate.

While many children do not survive for very long,
some do and go on to become very loving members of their families.

(Susanna's Mommy)

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