Living with Trisomy 18 / Edwards Syndrome

By Josie Murrell

This is the story of the incredible journey of Melissa, her family, and her community, and the challenges each faced.  Melissa’s condition, Trisomy 18, is one that carries a poor prognosis and her story is one of unconditional love, hope, despair, and joy, as she struggled to hold onto her fragile life.

 

For Melissa’s family, life was extremely challenging for her short nine years.  Her story gives the reader an insight into their lives and how each of them coped in their own way.  Josie, Melissa’s mother, in writing Melissa’s story, opens her heart and innermost feelings and thoughts, enabling the reader to gain an understanding of how, despite the many challenges Melissa faced, each achievement was a milestone to be proud of.

 

-Shirley Wass-       Parent to Parent New Zealand

• Language: English
• Publisher: Xlibris NZ
• Release date: Feb 22, 2013
• ISBN: 9781479793518

Josie Murrell

n/a

Book preview

Copyright © 2013 by Josie Murrell. 700480-MURR

ISBN: Softcover 978-1-4797-9350-1

Ebook 978-1-4797-9351-8

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

Rev. Date: 02/14/2013

To order additional copies of this book, contact:

Xlibris Corporation

0800-891-366

www.xlibris.co.nz

Orders@ Xlibris.co.nz

Living with

Trisomy 18/

Edwards Syndrome

The true story of Melissa’s fight to live

and her battle with Trisomy 18 / Edward’s Syndrome

By

Josie Murrell

Contents

Acknowledgements

1

In the beginning

2

Arrival

3

Six months old

4

Important connections

5

First Christmas

6

One year old

7

Necessities

8

Two years old

9

General Service Plan

10

Growth

11

Family life

12

Three years old

13

Additional support

14

Country life

15

Early Intervention

16

Continuing challenges

17

Feeding issues

18

Six years old

19

Improvements

20

Interaction

21

New challenges

22

Survival

23

A different path

24

New milestones

25

Communication

26

Care issues

27

Eight and a half

28

Fragility

29

Unanswered questions

30

Having a child with disability

31

Return to town

32

Exhaustion

33

The unexpected

34

Finality

35

A celebration of life - December 6 1997

36

One year on

37

Melissa’s rainbow………Melissa’s story

‘When you are joyous

look deep into your heart, and

you shall find it is only that which has given you sorrow

that is giving you joy.’

Kahlil Gibran

Acknowledgements 

I would like to acknowledge everyone who provided support for Melissa and for our family.

Thank you to my family: Owen, Paul and Brenda, Lisa and Peter, Anthony, Matthew, Cherie, and my grandchildren.

Thank you to my husband, Shorty for enabling me to document and share our life changing experience.

There are too many people to name everyone, so all of you who supported us - Thank you so much – you will never be forgotten!

1 

Dear Mel,

I am numb. I feel a devastating loss. In a sense I feel as if I am released from a prison and it is lonely back here, alone in the world. I miss you. I feel no sense of belonging here and at times this is scary. I’ve thought about it a lot and I know one way I can go on is to share the story of our life together, your nine months within me and the nine years and seven months we shared together.

Mel, your life was a miracle. You gave much in your short time. My beautiful baby grew into a precious grown-up girl. I miss you, Sweet Pea.

I hope you don’t mind me sharing your life. It almost feels as if it is your wish for me to share our journey together.

Some times were bad, but they were balanced with times of joy. The only way we can share this is by telling our story as it was.

In the beginning 

May 1987. We were a family: four children, Mum and Dad, and our foster daughter who had lived with us for the previous six years. We were busy with music lessons and exams, Cubs, Bible Study, wallpapering and redecorating, friends popping in, birthday parties, sharing a new business idea, and general family life. We were happy with what we were doing and were spending many weekends at our family beach house away from city living, to enjoy the simple things in life. We had fun at the beach, fishing, swimming, and beachcombing. We felt lucky we had so much.

It came as a shock to me in May and June when I had a recurring dream I was unable to dismiss or forget. It caused me great heartache.

I had experienced a recurring dream just once before. That time it haunted me too. With the chance of being ridiculed I finally shared it with the person in the dream. It had been an important message or vision for that person. I realised I had been part of something significant. I had done the right thing.

This time it was your Dad I needed to share my recurring dream with. It was difficult telling him I believed the vision showed a little girl we were going to have. We had to think about this as at thirty-nine years old I was at the end of my childbearing age. This would add a dimension of risk to our child and to me. We did a lot of soul-searching. We came to a conclusion together. It would happen if it were meant to be. We also agreed if I did not become pregnant within two months I had got the wrong idea from my dreams. I felt happy with our decision and our busy daily life continued.

On 14 August it was confirmed we were pregnant.

We were to have another child, a little girl, just as she was in my dreams. I had my usual nine months of pregnancy. I kept good health and life was great.

We chose some wallpaper to decorate a bedroom for you. It had rainbows on a blue background. We did not know how significant this wallpaper was to be.

I was doing new things. We continued with a new business idea and this was helping me to develop and grow in confidence. I felt happy and blessed.

I can remember people saying to me, ‘Aren’t you worried about this baby, you know, your age and everything?’

‘No,’ I said quite adamantly. ‘This baby is very much wanted and special.’ I also remember saying quite clearly, ‘I can cope with anything, even if there is something not quite right. As long as she does not die, I will cope with whatever happens.’

My vision had been of a little girl about ten years old, running and playing, never as a baby.

The last month with you in my womb I began to worry as you were small for dates. A locum doctor saw me during my doctor’s absence. This worried me as I had a history of going past my due date and I was determined nothing bad was to happen to you. We had come this far. As my due date came and went I began to feel a sense of urgency that nothing should go wrong and I asked to be referred to a specialist. I went in armed with my diary and notes as proof of when you were conceived as your smallness seemed to be the problem. I sensed danger and felt I could not allow us to wait any longer. It was vital we did not take risks by waiting. Mel, I managed to convince the specialist you were in trouble and it was time you were born. Still not totally convinced he admitted us into hospital and wanted us attached to a monitor overnight so he would have a real picture of what was happening.

In the early hours of the morning it was decided an induction was needed, as there were signs you were becoming distressed. Then, as you became more distressed within a few hours, it was decided you were to be born by emergency caesarean section. Mel, that really frightened me as I wanted to be at your birth, not unconscious and missing it all. I was scared for you Mel, and for me, as I had never had an operation before. By having an epidural injection in my spine I was able to remain awake while they cut me open to free you and bring you into our world.

2 

Arrival 

A little girl Mel, you were born just oh so little.

I had a quick glance at you before they whipped you away to the Neonatal Unit. You had just survived a traumatic birth and needed to be kept in a warmed crib.

You were perfect and so little, truly a gift from God.

It seemed as if it were forever when they sewed me back up. There was the long wait in recovery when all I wanted was to be with you and to hold and cuddle you. We wanted you so much. A photograph of you was taken by the Neonatal Staff and given to me, as I was unable to be with you at this time. You had olive skin, blue eyes, and dark brown hair. We also had your first professional photograph taken that night, as there was concern for you from the medical staff who had called the Paediatrician in to see you.

You were born on your sister’s twenty-second birthday. Initially Lisa was upset you were to share her birthday. On reflection, it was not long before she began to enjoy this and rejoice in the double celebration.

Your name Melissa - meaning ‘honey bee’

Helen - a name from my past, the second name given to me by my birth grandmother before I was given up for adoption. The flower for April is the sweet pea. We often called you ‘Sweet Pea’.

Melissa Helen, you were born 28 April 1988 at 0950 a.m., weighing 2395 grams (5 lb. 3½ oz.), 31 cm in length, and with an apgar of 5/7. Apgar is the first assessment by the delivery team after birth. It evaluates a baby’s colour, heart rate, reflex responses, appearance and muscle tone, and respiratory rate.

Within an hour of your birth there was deep concern for the well-being of your precious wee life. The Neonatal staff gave us indications all was not well with you, after one staff member had noticed telltale signs of a syndrome, one with a poor prognosis. I was taken from the recovery room and given a single side room. I was lonely without you. Not knowing what was happening was agonising.

All I had was a photograph of Dad holding you. It was sent to me from the Neonatal Unit where they were watching you closely. We had given our permission for some blood to be taken from you for testing. We were told your syndrome was not Down Syndrome or Potters Syndrome, but could be Edwards Syndrome.

This meant nothing to us except to leave us with a terrible fear. I could not sleep. I felt as though I was caught up in a nightmare.

The next day I was starting to feel more myself with my lower body no longer feeling like concrete as a result of the epidural. I had been virtually immobile.

You had some tests done this day. One was an ultrasound scan. This came back clear. A chest X-ray showed you had a slightly enlarged heart. The staff wheeled me to where you were and I was able to touch you and pray for you.

You had your first visitors, our good friend Helene and her daughter Elizabeth, and Cathy from next door. Dad brought my Mum, your Grandma, to see you for the first time. We had to gown up and wash before seeing you. It was worth it to be together. Throughout the day I would attempt to feed you. You had such a small mouth and tired quickly and you did not sleep well. You had your first bath at three days old and although you were still in the Neonatal Unit you were moved into an ordinary crib. The next step was for you to spend some of your day in my room. The days were long and slow. You were tired and needed to gain some strength. You just seemed to need to sleep and would sleep best with your cradle propped up. You never seemed hungry and we had to wake you for each feed.

Matthew was nine years old when you were born and he was very proud of you. You were already precious to us. We wanted to know what the Paediatrician thought was wrong with you and all about it, all the medical terms, what we needed to know, and what to expect. We had many unanswered questions. Finally your Paediatrician told us what he knew. It looked as if you had a syndrome, yet to be confirmed.

Your symptoms were heart problems, an undershot chin, low set ears, and rockerbottom feet that were gently curved upwards at both ends. It meant you would have feeding difficulties, there could be a lack of organs, infertility, and stiffness of limbs. Some tests would need to be done.

What a lot of things. We were stunned. The worst part of it was the uncertainty and the long wait for the test results to come back. My instant need was to find information about this syndrome now there was a possibility the condition you had was Edwards Syndrome. It was difficult to source information and the information we did receive we did not really want to hear.

A neighbour lent us a medical book. It spelt the syndrome out in a nutshell. The stunning news was a baby born with this syndrome has a low survival rate, and written in black and white were the words I will never forget: ‘It is not recommended to prolong the life of an infant with Edwards Syndrome’.

Edwards Syndrome is also known as Trisomy 18 and in medical terms means incompatible with life. In our terms it meant you would never lead a normal life. This rare chromosome disorder meant you would be unlikely to reach your first birthday.

Children with this syndrome often do not live long enough to leave the hospital at all and if they do the parents virtually take home a dying child. My world was shattered, Mel. Already I loved you so much.

Though so small, you were perfect, a precious gift. In our despairing moments our good friend and neighbour Cathy reminded me of Psalm 139:

Psalm 139 taken from the NIV Study Bible, Verses 13 –16

‘For you created my inmost being;

You knit me together in my mother’s womb

I praise you because I am fearfully and wonderfully made

Your works are wonderful I know that full well.

My frame was not hidden from you

When I was made in the secret place.

When I was woven together in the depths of the earth,

Your eyes saw my unformed body.

All the days ordained for me were written in your book

Before one of them came to be.’

Yes, it was true for me. You were so beautifully made.

We needed to take one day at a time.

I continued expressing milk as I hoped to breastfeed you. This was tube fed to you and we also tried you at the breast. You did your best. You tried hard, but you tired easily. We were not going to give up.

Reading in the Bible we came across James Chapter 5, verses 13 -16 where it explained about anointing the sick with oil and asking for healing.

On 6 May 1988 we had your baptism in our hospital room with our family and close friends. We had you anointed with oil and baptised and blessed. Your baptism was a very special time with us all together, with lots of love, prayers, and tears. Your godparents were your brother Paul and sister Lisa, and my good friend Felicity. I needed to make sure we had done everything we possibly could to help you.

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Your life was sprinkled with many special moments. Many remain unexplained to this day. Your Dad and I still remember one special moment when you were in the Neonatal Unit.

In the first few days of your life a nurse was with you when we went in to spend time with you. She commented on how beautiful and perfect you looked. We were to stop being so worried about you. She felt you would be all right. She also needed to tell us there were a lot of things you would have difficulty with and not function well with. This nurse gave us so much hope and encouragement. We did not see her again. Later when we wanted to thank her we were unable to establish who she was and we believe she was an angel there for us in our time of need.

Feeding you was our big challenge.

I continued expressing my milk and we now used the hospital narrow necked bottles with a black teat, as your mouth was so small. You were like a perfect doll in miniature. Around the fourteenth day we changed to feeding you four hourly instead of three hourly and we decided it was time to take you home. We wanted to get you home as soon