Stacey and Joel were married in August 2011 and a year later they learned they were pregnant. Stacey had a feeling that something was wrong, and an early scan showed exomphalus and a possible enlarged bladder. The doctor said they could have a diagnostic test to check whether baby had trisomy 13 or trisomy 18, also known as Patau's and Edwards' syndromes, or trisomy 21, better known as Down's syndrome, and they were offered a termination.
Stacey decided to have CVS, chorionic villus sampling as they wanted to know without delay. She was 12 weeks pregnant when the hospital telephoned her with the results. Her baby had Edwards' syndrome, was 'incompatible with life', and would probably die during pregnancy or be still born. Stacey was very shocked and would have preferred someone to tell her this 'face to face'.
The diagnosis was completely negative with nothing to give her and Joel hope.
Deciding what to do
I knew termination was not an option as I could not live with the guilt and 'what ifs' if we took the easy way out and gave up on our son. I knew he was a fighter as he had survived a bleed when I was 6 weeks pregnant. My husband was unsure initially, but then he agreed, especially after he felt the baby move and kick, and our families supported us completely.
The hospital gave me the name of groups like SANDS, and I contacted other families through facebook and the internet and was able to talk to them. Saskia was always an inspiration for me.
I wrote my birth plan without help using templates online. After changing hospitals everything improved, my son was monitored and I had privacy during antenatal appointments. I was refused a C section for fetal distress and one would be performed only if my life was in danger. After talking to our doctors we decided against strenuous resuscitation.
Our best memories are the first time I felt him move, the first time Joel felt him move, and when we saw him being cheeky on the 4D scan. When we knew he was a boy we named him Angelo Jack and I always spoke to Angelo when I was carrying him. I used to press my tummy gently to make him kick me, when he kicked I did it again and he would kick again. Joel played with him at night, we played music and sang to him. It is possible to enjoy a pregnancy if you accept you will have ups and downs. We had more good than bad days and we enjoyed every movement, scan, kick, movement and hiccup.
A charity, see below, paid for our 4D scans and they treated us more kindly. We learned our baby had a cyst on his cord not exomphalus, and cysts on his brain, but apart from that the scans looked normal. We were treated with care and compassion and they gave us all the images on a disc, and prints plus a video of Angelo moving about.
Our worst memories were the doctors wanting us to terminate, and people saying, 'just get rid of it as it will be severely disabled'. Lots of medical people told us Angelo wouldn't have any quality of life, and would be in pain. If I knew then what I know now I would not have had any more tests as my son was more likely to have been treated like a normal baby. The doctors said there was a high risk of Angelo being stillborn but did not prepare us for a stillbirth. I carried him to 40 weeks and 3 days and went in to labour on my own. Why?
Our advice to others
Listen to your heart, don't give up, and do talk to other parents who have had a similar situation.
If you can, have scans photos, handprints, footprints, and casts of hands and or feet. Keep something that smells of your baby inside a plastic bag to preserve the scent longer, and if you have the opportunity, hold and cuddle your baby.
We treasure Angelo's memory boxes, hand and footprints, hospital labels, photos and his first set of clothes. His birth was a positive experience and has given us many precious memories.
Most of our doctors were very negative but I think that some of them have now changed their views about continuing a pregnancy after a diagnosis of Edwards.
We hope the negative doctors take their heads out of old clinical text books, wake up to the reality of these pregnancies, and start to show a little more compassion.
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