A midwife’s belief in a diverse society, and her knowledge of the joys a child with Down syndrome can bring, is reflected upon in this post by Kim Porthouse. She addresses the ‘burden’ that can arise in ensuring informed choice for women in relation to Down syndrome screening. Originally published in Birthspirit Midwifery Journal 2009; 2: 14-19.
With every booking visit I battle with an internal dilemma; the issue of discussing pre-natal screening fills me with trepidation. I am a midwife in my second year of Lead Maternity Carer (LMC) practice. I am also the mother of two sons, one of whom (Brendon, pictured below) has Down syndrome. In this article I discuss how being Brendon’s mother impacts on my practice as a midwife.
In 1994 I was pregnant with my first son at the age of 32. I had initially decided on ‘shared care’ between my doctor and a midwife but I later changed to midwife-only care.
Routine pre-natal screening – Nuchal Translucency (NT) scan and Maternal Serum Screening (MSS2) – were not on the radar then. However, my doctor, who had also had her children in her 30s, was very keen that I should have an amniocentesis to check for chromosomal abnormalities, particularly Down syndrome. She informed me that, as I was older, I was at higher risk. When I asked about these risks, she told me that at my age I had about a 1:450 chance of having a baby with Down syndrome and that amniocentesis had a 1:100 chance of miscarriage. (I have since learned that the chance of having a baby with Downs at 32 is actually about 1:650.) She also told me of her amniocentesis with each of her children; it had been a simple procedure which gave her such peace of mind. If mine came back positive, I could be offered a termination. She told me that it was recommended for all women aged 37 years and over but she thought it should be offered more widely.
I had been fortunate that about 10 years previously I had worked for the Intellectually Handicapped Society (IHC) for a few months, therefore Down syndrome was something I had come across and about which I had an understanding. I knew that if my baby had Down syndrome I could love it. I guess that was all I needed to know. I also knew that termination was not an option that I could go through with and I would not put my pregnancy at such a high risk of miscarriage. I therefore declined amniocentesis. My first son Chris was born and he was ‘normal’.
Three years later at the age of 35, I was pregnant with my second son; it had taken me 15 months to fall pregnant. A good friend of the same age was pregnant with her first child. She told me she was having an amniocentesis and would terminate if there was anything wrong. I found it amazing that she could be so black and white. I found her fear of disability astounding. This made me consider the issue again for myself. My risk of having a baby with Down syndrome was now 1:350 and the recommended age for amniocentesis had recently been lowered to 35. However, I quickly decided that this test was still not right for me and I could not risk miscarriage of this much wanted baby. My second son Brendon has Down syndrome.
Nothing could have prepared me for the griefthat consumed me with the news of Brendon’s Down syndrome. It was like a physical pain in my chest; my hopes and dreams were shattered, and I didn’t think I would ever stop crying. I felt I was being punished for wanting another child when my husband would happily have stopped at one (he had two other older children). I felt isolated, alone and different. I felt like a failure.
When told Brendon had a heart defect, I didn’t feel much about this at first; I couldn’t get past the words ‘Down syndrome’ but over the next couple of days it all sunk in and my concern grew. My baby had a life threatening condition. Somehow Down syndrome didn’t matter so much anymore – what was most important to me was that my baby lived! I was still hurting, still upset and feeling very cheated. I was scared of all the unknowns but I became increasingly aware that I wanted my child no matter how he was packaged. Deep inside I knew I could live with Down syndrome. Deep inside I believed this child has a right to life – after all, that was all part of the decision not to have amniocentesis. I began to know my grief was about shock, and about the loss of what was expected rather than about ‘what is’.
Brendon was so sick that at first I was only allowed to hold his hand. He was also very agitated. After three days they finally let me hold him. As I held him and we looked at each other, his jerky movements began to ease and he became totally calm. I could feel my own tension draining from me as I felt him relax. As Brendon fell asleep in my arms, I could finally let all my maternal emotions flow out to him. This was a turning point for me; I knew he needed me, and I was besotted. Although there was still sadness, the healing process had begun. (It is vital women get to hold their child as soon as possible after birth. Both mum and baby need time to be as one. The midwife needs to be the protector of this and, even when the baby is very sick, she needs to find a way to bring mum and baby properly together.)
For 11 years now Brendon has been the source of such immense pride and joy. He has enriched my life in ways I never would have imagined, and he has touched the lives of many in such a positive way. Mostly Brendon is easy to live and get along with. Yes, my life has been changed by Down syndrome. Yes, life has seemed hard at times, and there have been some frustrations and difficulties. The hardest thing, however, is individual and societal attitudes to disability and the non-acceptance of such diversity. I am blessed to have my son, and I have no regrets. At times normal children are challenging to parent and provide their fair share of frustrations; these are just different than those of a child with Down syndrome. Who has the right to say which child is a worthy challenge and which one is not?
Since having Brendon I have met so many amazing families. We all share the story of grief and deep sadness at the births of our differently-abled children. However, we all also share the stories of great happiness and enrichment that our children have bought us.
I am so frightened by the way people view disability and think that it can only bring hardships. I worry about how people make decisions about screening based on their fear of the unknown, and how they believe they wouldn’t cope. My experience is that people cope and rise to the challenge and generally find their life enhanced by their child.
I am also frustrated by the focus of screening out children with Down syndrome. To me, it implies that having a child with Down syndrome is a really bad thing, which it is not; it is simply different. The implication is that if a child has Down syndrome (or Spina bifida, our other widely screened for condition) that these children’s lives are not worthwhile and that they have nothing to offer to society or their families. I find this implication offensive. Many people with disability grow up to hold jobs and be active, contributing members of society. Perhaps if women choosing amniocentesis for a positive screen were offered the opportunity to receive information and/or contact from the New Zealand Down Syndrome Association (NZDSA), they could be well informed about living with Down syndrome and consider all their options whilst waiting for a result.
Screening does not diagnose normality; it only measures specific markers, which are used to calculate and provide a risk analysis. There is a belief that if women screen for Down syndrome and have a negative test then their child will be normal.
So many people do not seem to realize that there is a diverse range of disability and, conversely, ability. Most conditions cannot be screened for and normal karyotyping (determining the appearance of individual chromosomes) provides no guarantee. For example, I know a family who had normal karyotyping on amniocentesis and yet, when the child was born, she had a structural abnormality of the brain that meant she was severely disabled.
I know I am not the only midwife with a child with Down syndrome, and I cannot speak about how others feel on this issue, but these experiences and thoughts contribute to my internal turmoil. In one corner is my personal story, my own feelings about termination, my passion for the rights of children with disability, my belief in a diverse society and my knowledge of the joys and love a child with Down syndrome can bring. In another corner is my sadness at society’s non-acceptance of this diversity, and the hardships parents can face because of that non-acceptance.
In yet another corner is the feeling that I, more than anyone, absolutely have to offer every woman pre-natal screening, not because I think it is a good thing but because I have a child affected by the condition for which screening is available. What if I didn’t discuss it and then someone had a child with Down syndrome? It wouldn’t be long before they found out I have a child with Down syndrome – after all, my family is featured in a ‘We Welcome Your Baby’ pack and DVD produced by NZDSA. Would I then be accused of not fully informing women of their choices, of deliberately not offering screening, or, of influencing their decisions?
I have to be so careful of the language I use, and not present this issue with bias. I’m sure every midwife has a bias on whether she thinks screening is better or worse for society. I wonder, though, how many feel the same pressure to phrase the issue in a non-biased manner? How many midwives even think about how their language and presentation might influence a woman’s decision?
I feel I have to keep the fact that my child has Down syndrome a secret, in case people would feel uncomfortable about choosing to screen and feel unduly influenced by this. I hate to deny this facet of my child’s existence; I am proud of my son and I do not apologize for his Down syndrome and yet, as a midwife, I feel compelled to hide it from the families with whom I work.
Whilst I absolutely believe that women need to make their own decisions whether to screen or not, and not be led by the health professional, why do I feel I have to present such a neutral front? When women ask me what I think, why do I feel I can’t share my view in case it is interpreted as trying to influence them? It may be that my story may affirm their own feelings rather than challenge them, yet I can’t take that risk. I allow women to make decisions based on preconceived ideas of Down syndrome. I ask myself – why is it I feel I cannot talk about the positive aspects of parenting a child with Down syndrome? After all, couldn’t this information be given as part of fully informing women about Down syndrome along with medical descriptions of disability?
Snijders (1998, pp. 343); NICE Guidelines, 2003, in Pairman et al (2006, p. 594); Meylan (2007) [hyperlink]; Schuchter et al. In: Irving (2004, pp. 18-21)
Sometimes I am offended when women say they want to screen because they wouldn’t want one of ‘those’ children. I want to ask them if they know and have firsthand experience with any of ‘those’ children, and what is it about ‘those’ children that is such a problem. I want to tell them of Brendon and that my life is not ruined by him; my life is good. However, I just nod and say okay and fill out the forms. I feel such relief when someone chooses not to screen.
Application to Midwifery
The Ministry of Health (MOH) has provided funding for NT scans within the Section 88 Notice MOH (2007). It has funded MSS2 screening with the recommendation that NT should not be used in isolation but in conjunction with MSS2 – one combined result being provided to women.
There is, however, debate as to the robustness of these screening tools and whether they meet the criteria for introduction. Tests should be simple, sensitive, cost-effective and reliable, and there should be effective, acceptable and safe treatment Irving (2004, pp. 18-21).
The MOH has placed an expectation on LMC’s to offer these screening tools to women. Currently in New Zealand midwives receive no training on how to counsel women about pre-natal screening. Nor do midwives receive any training or advice on counselling the women and their families that receive positive screen results. Should we as midwives even be offering women screening if we haven’t had such training?
Midwives are autonomous practitioners. We need to ask ourselves why we should include this screening in our practice – is it just because it’s available, or, are we obliged to offer it because New Zealand women have the right to be fully informed? If as a profession we believe we must offer screening then there is a need to take responsibility for ensuring midwives are provided with adequate education and training. Midwives must be provided with the accurate, objective information with which women can be fully informed. Women need to be given information that provides a balance of perspectives so that they have the power to make informed, not just emotive, decisions. As a profession we also have a responsibility to ensure that there is nationwide consistency regarding what screening is available and what is offered to women. We should be ensuring that when screening is offered that women are offered the most accurate options available.
When considering this issue we must ask – what is the MOH motivation for wanting screening introduced, and, is it about what is ‘good’ for society? The main motivation is most likely about money – screening to prevent Down syndrome is probably cost effective to the health and education sectors. If the MOH expects us to offer screening then perhaps LMC’s should expect the MOH to fund adequate training programmes. Perhaps the New Zealand College of Midwives could seek funding from the MOH for this purpose and assist the implementation of a national education programme on screening, which could also include other screening issues such as HIV.
In summary, I see the challenge for midwifery is to be informed, objective, and balanced in the presentation of this issue. Midwives need to be respectful of the sensitivity of this issue and of individual views; pre-natal screening is a highly personal, emotive and culturally sensitive arena. In all reality pre-natal screening for Down syndrome is here to stay. I hope my story has highlighted there are two sides to this issue and that it will encourage midwives to examine their own feelings, as well as their discourse when talking to women.