Dr Shah said he needed to check Martha’s heart, there and then. He spent some minutes scanning with a portable machine. There might be a couple of small defects, he told us, but it was too early to tell their severity. Often these things resolve on their own. He would make a referral for her to be seen by a cardiologist.
Then he gave us a booklet about Down Syndrome and said he would ask someone to take Martha’s blood for the chromosome test. He also mentioned something that sounded like a Fish test. Apparently that would give us a quicker indication whether or not Martha might have Downs, but it was less accurate than the full chromosome test. Or something like that. I was struggling to grasp information. It was all too sudden, too shocking*.
When he asked if we had any questions, all we wanted to know was how quickly we could get the blood tests done. We just needed to know. One way or the other. Nothing else made much sense.
My tiny baby screamed as the nurse took several attempts to draw a tubeful of her blood.
‘I’m so sorry’, said the nurse, ‘We need quite a lot of blood for these tests.’
‘Please try again’, was all I could say. I didn’t care that my baby was hurting. My need for an answer obliterated compassion.
Back on the Postnatal ward, the too-nice midwife closed the curtains round my bed. She brought me my lunch.
‘There’s apple crumble for pudding, but I don’t suppose you’ll feel much like eating right now?’
Hospital food wasn’t up to much, but I liked apple crumble.
‘Yes I’ll have that please.’
I felt absurdly angry. It was bad enough that my baby had Down Syndrome. Now they were trying to do me out of my pudding as well! The mind attaches emotion to the small things it can grasp.
Adrian and I exchanged practicalities. He needed to get home to the children. We would tell our mothers, but no one else until we had the test results. Dr Shah had said he wasn’t certain, so there was still space for hope. But as Adrian was about to leave he asked me if I was all right. I looked down at the sleeping baby in the cot. Tears pricked my eyes for the first time.
‘No. Of course I’m not all right. You’re leaving me here on my own. And I’ve got this … this defective baby.’
I was shocked by the bitterness in my voice.
I was told I couldn’t go to the low risk hospital now. I was offered a private room here in the main hospital instead. It was a narrow white room with a window overlooking the car park. It felt like a prison cell.
I sat alone in the white bed, Martha sleeping in her cot at my side. For long hours I had no one to talk to. The hospital staff were busy, Adrian was looking after the other children at home and I didn’t want friends to visit. I wouldn’t have known what to tell them.
Rationally I knew the midwives had given me this single space as a kindness, but I felt as if I had been removed to avoid contaminating the other, normal mothers and their babies. When I left my isolation to make a cup of tea in the patients’ lounge I saw the mother I had been chatting with only last night. She didn’t speak to me, and I didn’t acknowledge her. I thought she might be afraid of me. She must know there was something wrong with my baby. I carried the miasma of bad luck about me. I was the bogeywoman now.
I cried in that little room. I cried a lot. Someone seemed to have turned on taps inside my eyes and the tears just wouldn’t stop. I ate my chocolates and read my magazines, but nothing made me feel better. When my mother brought Verity and Jerome to see their new sister I washed my face and smiled and pretended everything was all right. But it wasn’t. Nothing was right at all.
I read the booklet about Down Syndrome over and over until I knew it off by heart. These were the days before you could easily google information on your mobile phone, so at least I wasn’t tormented by an endless search for online answers. I spent ages gazing at Martha, trying to determine from the shape of her ears, her eyes, her fingers whether she really had Downs. The longer I looked, the less I knew. The not knowing was intolerable.
Sometimes I tested out accepting it. Ok, I told myself, so she has Down Syndrome. You know the doctor wouldn’t have said so if he didn’t think it was true. But I couldn’t allow myself to believe it for long. If it was true then my life was over. If it was true today, it would be true for the rest of my life. Until I died I would be the parent of a person with Down Syndrome. I didn’t know how exactly, but I was certain my whole life would be blighted. It wasn’t like an illness that might get better; this was no temporary setback. There would be no escaping it, no choice, no exit.
I was worried about Adrian. He hadn’t even wanted a seventh baby, and now I had burdened him with a disabled child. When he came to visit me alone I asked him:
‘Do you think we should give up the baby for adoption?’
I was holding Martha close as I said it. I couldn’t bear the thought of giving her away. I loved her. But I couldn’t imagine us living the rest of our lives with her either.
‘No of course not’, he said. ‘She’s ours. We have to keep her.’
But he was grim-faced as he said it, and I wasn’t sure whether to be sorry or relieved.
I asked for a hospital chaplain to come and see me. Maybe God had some answers. At least it would be a relief to speak with someone different. I was expecting a priest in black, but instead an elderly lady in a cardigan showed up.
‘Hello’, she said. ‘I’m one of the chaplaincy team. Congratulations on the birth of your beautiful baby.’
She peered into the cot, smiling and cooing. She gave me a printed card with pictures of baby ducklings and Bible verses on it. She didn’t say anything about Down Syndrome, and I thought the staff must have neglected to tell her.
‘Thank you’, I said. ‘But, but … they say there’s something wrong with my baby.’ And it all came tumbling out. I was telling this woman, this kind stranger, all about our terrible year. How Adrian’s Dad had died so suddenly, and then my Dad too, and how this baby had been born on the exact anniversary of Adrian’s Dad’s death. And how I had been so sure, so certain, that God would give us something good after all the bad stuff. And how the baby was meant to be the good thing. But now, but now ….’
As I dissolved into tears the chaplain held my hand. Then she spoke quietly but with conviction,
‘But this wonderful baby is the good thing. Of course she is. You just can’t see it yet.’
I was certain she was wrong. But her words stayed with me.
*A ‘FISH’ test is an acronym short for ‘Fluorescent In Situ Hybridization’. This is a technique that can determine how many copies of a particular chromosome a cell has. It can therefore detect the presence of a third chromosome 21 which is the cause of Down Syndrome. Results are usually available in a few days. A full diagnosis of a chromosomal abnormality such as Down Syndrome will require karyotyping, where the cells are cultured and analysed in more detail, but this can take as long as a few weeks. You can read more here if you are interested: https://www.verywellhealth.com/diagnosing-down-syndrome-1120396
Karen Lawrence is an author and mother of seven living in Billericay, Essex, United Kingdom. Letting the Light In is Karen’s personal account of having a baby with Down Syndrome. It will be published in book form in the autumn of 2021. You can read more of this story and more of Karen’s other writing at her website, https://karenlawrenceauthor.com
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Karen’s first book, Finding Your Calm Space: Thirty-One Ways to find Calm in a Crazy World is available from Amazon at https://www.amazon.co.uk/Finding-Your-Calm-Space-Thirty-One-ebook/dp/B08NZ1W9QY/ref=sr_1_3?dchild=1&keywords=finding+your+calm+space&qid=1606147885&s=books&sr=1-3