Now We Are Ten: An Open Letter To My Obstetrician

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

November 2018 marks a personal milestone for us as a family.

Our Freddie, who has Down’s Syndrome, celebrates his tenth birthday.

So, this month I have written a series of three related posts reflecting on this: the first post is a letter from me to Freddie in which I tell him about his early days and compare them to where we are now.

The second is an open letter to the obstetrician who looked after me when I was pregnant with him, in which I share with her some of the things I have learned during my first decade of ‘lived experience’ as the mum of a child with Down’s Syndrome.

The third post looks forward, towards what the next ten years may, or may not, bring us.

Dear Obstetric Consultant...

I don’t know how many of your patients get a personal visit on the ward after they have given birth, but you came to see me.

My friends had just left, and I was alone in a side room without my baby. Your face was grim, and so very, very sad: a tragedy had happened, one you had foretold months ago, and attempted to avert as you earnestly tried to get me to listen to reason.

As far as I was concerned, it was nothing of the sort. My baby was alive, downstairs in the neonatal unit.

To my mind, death would be a tragedy, Down’s Syndrome was just a circumstance, an added detail.

It is almost ten years to the day since that visit. You didn’t get to meet my baby then, to see how beautiful, how responsive, he was.

I would love for you to meet him now that he is a lively, inquisitive and humorous little boy, so that you could see that there was no need for you to be so worried, so sad.

We are not a story of sadness and catastrophe: thanks to your care we both made it through a high-risk pregnancy (high-risk due to my own medical history) and are now happy, healthy, and enjoying the life we lead. We are an obstetric success story.

Family life did not grind to a halt the day that he was born.It changed, yes, but it continued and even progressed.

Having our baby with DS pushed us right out of our comfort and complacency zone; it challenged everything about the way we thought and the way we lived.

It made us realise that we are more capable and more resourceful than we ever imagined. We learned that it is OK to trust our instincts: not to fear taking a leap of faith if it feels right.

That is why we now live in the house we coveted as a young couple (then living in a two-up-two-down). When it came onto the market we took the leap, snatched the chance – our previous selves would have been too cautious, too afraid, to take on the expense, and the sheer amount of work.

Now we are braver.

Ten years ago, neither I nor my husband had anything more than a basic high school education behind us. We are both graduates now – work, mortgage and three children notwithstanding.

In between we have done all the things that regular families do – we sometimes just have to consider a little more carefully exactly how we go about doing them. We have to prepare and plan more, but we still do things.

So, ten years later, I can say, hand on heart, that tragedy was averted after all.

But was only averted because I refused to listen to so-called ‘reason.’

It knocks me sick to think that if I had allowed myself to be intimidated by the grave inventory of medical complications you listed, or the social complications that you implied were bound to follow.

If I had not been old and wise enough to have learned that ‘quality of life’ is a subjective concept, then I might have been persuaded to destroy my own beautiful, beautiful little boy, whom I love so much, and who loves me so very much.

And for NO good reason. He does not ‘suffer’ from Down’s Syndrome at all.

He is a contented young lad with a great capacity for learning: his reading ability is the same as a typical child his age and he is gradually coming to grips with all the other school subjects, too.

More importantly he has a tremendous capacity for forming positive relationships: this must be one of the most important skills any human being can possess, and one of the greatest determiners of future happiness and quality of life.

Every day I thank my lucky stars I am so stubborn and strong-willed – the thought of what might have been if I had been less headstrong, less sure of myself, or more inclined to do what others tell me is ‘reasonable’ or ‘sensible’, does not bear thinking about.

The grief at ending a welcome (if unplanned) pregnancy would have been overwhelming.

I cannot imagine how much grief and guilt would have been compounded if I found out later, as I inevitably would have done, that the prospects for a child with Down’s Syndrome, and their families, were not nearly as bad as I had been led to believe.

I have read that maternal mortality is higher in the years following abortion (or pregnancy loss for any other reason), and I do not think this is a coincidence.

Termination would not have been a ‘get out of jail free’ card for me, nor would it have alleviated suffering – for us there has been none – rather, it would have caused suffering for me, long-term.

I am not accusing you of being deliberately directive, or laying any kind of blame at your door. You were simply doing your job, being a good doctor.

I understand that doctors have a duty of care to their patients to explain to them the possible complications or consequences of any course of action or treatment: they are trained to consider things in terms of risk v. benefit.

In the case of a patient who has become sick the benefit of any treatment or procedure will usually be obvious – health will be restored, and any possible risks are weighed against this.

But, when counselling a patient carrying a baby with Down’s Syndrome medical professionals often talk only about complications and ‘risks’. I suspect that most obstetricians and midwives see no positives in the situation at all.

They are conditioned to regard it only as a medical problem to be ‘solved’ by terminating the pregnancy.

But, as I have learned over the last ten years, there are some positives, because Down’s Syndrome is more than medical.

Many of the problems associated with Down’s Syndrome are not caused by the syndrome itself, but by a society that insists on viewing it in the most negative possible light.

It would be easy to dismiss the experiences of one mother, like me, with the words ‘they’re not all like him’.

I have heard of other women, in other hospitals, being told ‘don’t believe the happy pictures’.

But, after ten years of lived experience parenting a child with Down’s Syndrome, getting to know people with DS and their families, I can tell you that the happy pictures are believable. But you don’t have to take my word for it.

While there may not be anything positive about DS in the medical textbooks, there are scholarly papers out there that do present an encouraging picture of family life with Down’s Syndrome.

One series of studies looked at the perceptions of parents and siblings, and also at the self-perceptions of young people and adults with Down’s Syndrome.

The researchers discovered that, amongst the sample of parents studied, 99% reported that they loved their child, 97% that they were proud of them, and 79% reported that their outlook on life was more positive because of them.

The overwhelming majority reported that they were happy with their decision to have them.

The picture amongst siblings was similarly positive, with 94% reporting that they were proud of their brother or sister with DS, and 88% that they were a better person because of them.

Amongst young people and adults who have DS 99% indicated that they were happy with their lives, 97% and 96% respectively reported that they like who they are and how they look. The overwhelming majority indicated that their lives were happy and fulfilling.

Other studies have looked at the effect that having a child with Down’s Syndrome has on divorce rates.

In this, researchers discovered something surprising – not only did the parents of children with DS have a lower divorce rate than the parents of children with other kinds of disability, they also had a lower divorce rate than the parents of typically-developing children.

A quite different picture to the one presented to pregnant mothers during the antenatal screening process, I think you’ll agree.

Which is why I have become involved in campaigning for more balanced information to be given to expectant parents, information that is up-to-date and more than just medical: information that includes the lived experience of parents like me -- and our children, too.

Many people with Down’s Syndrome are more than capable of speaking up for themselves and they are shouting loud and clear that life with Down’s Syndrome is well worth living. If only the world would listen.

Ten years ago you listened to me when I refused to consider termination, with a heavy heart you accepted my decision and did not urge me to change my mind, or repeatedly ask if I had done so.

You made a plan for our care. And it is because of that care that I am now planning my baby’s tenth birthday, and after that, the next stage of his education.

I hope that the next time you have to tell a couple that their unborn baby may, or will, have DS you will think of us and your heart will be a little less heavy because of what I have told you today.

Can I ask you, when you go into that consultation, not to tell the couple that you have ‘bad news’ for them – describe it as ‘information’.

And when you list the possible medical implications, as a good and diligent doctor must, please also remember to tell them that:

Although certain medical conditions are more likely, they are not inevitable. Some people, like my son, have none at all.

Advances in medical science and technique mean that most of the conditions that may arise can be effectively treated or managed, enabling people with DS to live longer and healthier lives than ever before.

Approximately 50% of people with DS don’t have a heart defect.

Individuals with DS tend to have significantly higher adaptive skills than their low IQ scores would predict.

And you can reassure them that, if they choose to proceed, they and their unborn baby have every reason to look forward to a great life together.

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