He was my son, not a dying baby.

Conversing happily with my son we had been driving home when my mobile phone rang. Startled at the sound of my obstetrician’s voice I had pulled off to the side of the road. At 18 weeks gestation I was told in a factual tone that the results from my serum screen had come back, indicating that our baby was at increased risk of Trisomy 18. Gripping the steering wheel my head had spun as he talked, explaining that Trisomy 18 was worse than Trisomy 21 because our baby was not going to live. We had been thrilled when we heard the news of my pregnancy but now my temples throbbed and tears brimmed in my eyes. Suddenly my world was turned upside down and it had felt like someone reached into my chest and ripped my heart out. My husband and I decided that an amniocentesis was needed for a positive diagnosis and this was arranged for the following day. Studiously the sonographer performed the diagnostic ultrasound with a furrow across his brow. Watching the monitor I saw my baby moving as I watched the colours of red and blue flow through the heart and heard the regular, fast rhythm of the heartbeat. Quietly I hoped that the news was good but the creased brow had told me otherwise. Holding the amniotic fluid in his right hand the sonographer had glanced from it to me and empathetically informed me that the news wasn’t good and that he didn’t need to send the sample off for a positive diagnosis. Once again my world was crashing and all I wanted to do was bury my head in a pillow and sob. The following weekend dragged and had been filled with streams of tears and emotional turmoil. All I wanted to do was hold my unborn child in my arms and love and protect him or her. The aching in my heart refused to cease, as had the dull throbbing in my head. Through the tears, however, I had been able to gather my thoughts and weigh up what was best for our unborn child, as well as, for us as a family. At 18 weeks my baby already had a well developed central nervous system, certainly a beating heart, all organ systems were developing and the ultrasound had allowedme to see my baby’s well defined features. However, the heart was enlarged and there was significant hydrocephalus and yet, day by day, I felt and welcomed the movements. Was termination an option and, if so, what were the consequences for our unborn child and for ourselves?Who could advise me?Therewere groups that were extreme but they lacked balance in their arguments and at this time itwas notwhat Iwanted or needed. At the end of the day the only person that was there to advise me was myself and I was torn because I didn’t feel like I knew enough tomake such decisions. The thought of destroying this much loved life through termination made my temples throb painfully and made me feel sick to the stomach. There was no way that I could entertain the idea of possibly chopping my baby into several different pieces through the use of a metal curette and cause him or her excruciating pain and, in the end, this thought wasmore powerful and influential than any emotional pain that I might have to endure. My heart told me that what was best for us all was to love this precious baby and give him or her every possible opportunity of life. On the following Monday my obstetrician confirmed what we already knew but also that we were to have a son, who we would now name Liam. There was no discussion between the obstetrician and ourselves about a termination but when offered the choice we had informed him that we would continue as normal and no further discussion about Trisomy 18 or our choices were entered into. This was the way it was to be throughout my pregnancy, no advice was proffered; although on each visit I would be asked how I was coping. At each visit, when this question was asked I would answer, ‘One day at a time’. The ensuing months encompassed shared-care visits between my obstetrician and general practitioner. Concerned about the stress that a vaginal delivery would place on Liam, knowing that Trisomy 18 babies were easily stressed, I had asked at one consultation about the possibility of a caesarean section but the obstetrician dismissed the idea without going into any great detail. He did, however, consent to the idea of monitoring Liam during delivery. My only source of information about Trisomy 18 was to come from the internet, which was then supplied by myself to these professionals and I was to wonder, particularly, about my obstetrician’s lack of initiative in gathering his own information and about his lack-lustre interest. Was it that he considered my son not to be worth the investment because, after all, he was going to die? Although, in the end it was my assumption that when you made a choice that went against the grain that this was what you gotdno support! However, I knew that this was about my child and to me he was not just a dying baby, he was my son, and I knew that I would fight for his rights because I was his mother and his advocate. As the months went by I ventured into the hospital where Liam was to be delivered to introduce myself and take in copies of the reports. When the midwife retrieved my file I was surprised to see that there were no copies of any results and only a few scrawled notes. However, I was relieved that the ward would now know; but my first shock was not to be my last shock! Still no support came from anywhere and because Liam also had spina bifida I knew that I needed some support and knowledge about the condition so went to where I had hoped that some support would come fromdthe internet. Correspondence to Ms Pauline Thiele, C/O PO Box 298, Red Hill South VIC 3937, Australia; [email protected]