Our family's life changed when my baby sister came and went from our lives. This is her story, writes Paul Lambert
DECEMBER THE 25th, 1981 was a different Christmas for one very special reason. Mam was going to have a baby.
She was five months pregnant then and I wondered whether the baby could hear Star Wars on the television on Christmas day and if it thought it was going to be born into that universe. It might be disappointed.
I do have some memory of thinking about the new baby and getting excited, but nine months is a very, very long time for a nine and a half year old to even begin to think about, so the next thing I remember is someone, maybe my dad, telling me it might be a girl.
A girl? A sister? I liked that idea. I recall liking that idea. Now, there were five of us all told at this point.
Hugh and Angela and the three boys. Alan, Paul and John. So, I had an older and younger brother already.
Another younger brother? Nope. A sister seemed like a good solution to me.
And I was also about to turn 10, so having a little sister to look after seemed appropriate for a huge boy of 10.
So, on April 12th, 1982, when my nana came off the phone and said we had a sister, I couldn't believe my luck. Anna Lambert. Hello, little baby.
However, something wasn't right, or normal, with Anna. We were told she would have to stay in hospital for a while. This "something" called Edwards Syndrome, which I didn't understand, meant that there were numerous serious problems and Anna didn't come home for what felt like a very long time.
There were things wrong with her that I could see though. She was small and quite pale, of course, and one of her tiny ears was folded over at the top and one little foot was slightly crooked. But that was all. Otherwise, we all felt she was a very pretty little thing and I found myself wondering what she was going to look like as she got older.
What we as children didn't know was that the doctors couldn't explain to our parents why Anna was alive at all. Apparently, babies born with this syndrome live for only a short time if they live to be born at all.
So, we would go in to Mount Carmel hospital in Dublin and visit her in her ward. We'd look at her sleeping quietly in her little bed with her tiny oxygen mask on and carefully stroke her soft, black hair.
Sometimes she would open her twinkly eyes and look at us and maybe frown and then just go back to sleep. Outside of that, my memories of Mount Carmel hospital are of mostly playing in the corridor or out in the grass.
Anna came home to us for just one weekend. In her Moses basket with the bottle of air beside it, we'd peep in at her throughout the day and tiptoe away again. She smelled of baby and clean things and she would never cry. Each night one of us, usually my older brother, would help by carrying her bottle of air upstairs to mam and dad's room where she would sleep in her basket beside them in bed.
Then, suddenly, she was back in the hospital.
My next clearest memory is of mam and dad calling us all into the kitchen at home to tell us that Anna had died.
Died?
I always remember noticing how my mother was upset but this wasn't the usual way I'd seen her upset about anything before. We were all just silent. I remember that.
Anna's funeral was held in the small chapel at Mount Carmel and we all went to see her in a room to one side of it. A tiny, white coffin on a stand in the middle of the room and she was inside in a little pink dress, looking like a white doll.
We kissed her and I felt how cold she was and saw how her lips were white, too. The frightening idea of her being dead crept up inside me but the feeling that she was my sister washed over it. It can be very hard to explain that to people who've never lost anyone.
Then we were all sitting on a pew. Anna in her white coffin near us in front of the altar. I don't remember crying but just feeling very sad. The next-door neighbour brought us boys to McDonald's instead of attending the graveside service. For some reason I don't remember that at all.
In the time following Anna's death, I believe we became a somewhat different family than perhaps we may have if she had lived. We would regularly make day trips to Deansgrange cemetery to plant new flowers and tidy up Anna's plot. Mam would bring sandwiches and drinks and we'd actually play about and explore the old place.
But we would always say goodbye to our sister when we left and it quite quickly became an excursion that wasn't really associated with anything bad, if I can say that.
My mother took up ceramics. She made dozens of beautifully handmade floral plaques and frames for herself and friends and one for Anna's grave and the graves of other relations buried at Deans Grange.
This developed into a market stall with, among other things, ceramic stars for Christmas on which people could have a child's name written to hang on the tree. Then from working with ISANDS (Irish Stillbirth and Neonatal Death Society) to becoming involved with the SOFT organisation (see panel below) and ultimately becoming a chairwoman while my father produced its newsletter.
I don't expect that any of that would have come about without the presence of Anna in our lives.
The experience of a baby or a child dying is an extremely traumatic one for those involved, obviously, but it's a different kind of grief from that which most people may assume.
My parents had to deal with an awful lot more than you can imagine at that time. Anna suffered more than 30 heart attacks in her five months and some would happen on the steps of Mount Carmel as my mother held her in her arms.
She also told me not long ago that I actually said to her at the time that I thought it was my fault Anna had died. Children don't know how to recognise grief and simply know that they feel bad and assume theyve done something wrong.
My father was affected enough to be without sleep for the duration of my mother's next pregnancy which, ironically, brought us a perfectly healthy younger brother. Wee Sam, who's not so wee now. Making us four boys after all.
But despite all of that we as a family know ourselves as five children and always have. Four lads and a girl. Our beautiful guardian angel Anna, who is now 26 (and recently joined by my father, Hugh) who no doubt looks down on Angela and the boys with probably the same degree of amusement, affection and wonder at this life, with its deaths, that we in turn share within our family as we are now.
A philosophy on existence that her small intervention brought about. That's what I feel anyway.
SOFT's advice for families of children born with Trisomy disorders
BABIES BORN with the chromosomal disorders Patau's syndrome (Trisomy 13) and Edwards' syndrome (Trisomy 18) have serious life-threatening conditions, with limited life expectancy and developmental delay.
Dr Patau and Dr Edwards identified the features of these syndromes in 1960; both are the result of an extra 13th or 18th chromosome, respectively, being present in each cell. (Another Trisomy, 21, is well known as Down Syndrome).
In the majority of cases, nobody knows why a baby is conceived with Trisomy 13 or 18.
A high proportion of miscarriages are thought to be caused by chromosomal disorders like these and it's rare for such a pregnancy to continue to full term. In Ireland, north and south, there are about 20 babies with these syndromes born each year.
Soft, the Support Organisation for Trisomy in Ireland, a voluntary group established in 1991 to provide support for families of children born with these disorders, has just published an updated version of its advice book for parents, called Why Our Baby.
Written by parents who had a baby with a T13/T18 syndrome or related disorder, it contains detailed information on both syndromes, advice on caring for a baby with one of the syndromes, dealing with family grief and families' own stories.
Work on the new edition began four years ago: the late Hugh Lambert, former Irish Timesjournalist, Irish Presseditor and father of Anna, who was born and died 26 years ago from Edwards' syndrome, had begun working on it before his death three years ago. He suggested the name change from Why My Babyto Why Our Baby.
Paula Doyle, who continued as editor, says the book, first published in 1996, has been updated with new family stories, a new chapter on heart defects (which affect nine out of 10 babies born with Trisomy 13/18), one on prenatal diagnosis and one called When Your Baby Lives. Some babies live for a few months, but some may live into adulthood.
Soft provides support during prenatal diagnosis, a child's life and after a child's death. It puts families in contact with one another, providing information, publishing a newsletter, organising conferences, family days and maintaining links with Soft organisations worldwide.
It can be contacted at softireland.com; info@softtireland.com, or tel: 1800-213 218.
• Why Our Babyis available from maternity hospitals or from Soft