Moving On

This is likely to be my last post in a while. The cemetery rang to let us know that our plaque, to our two boys, was ready. We went to visit it, and it’s perfect. Granite with gold lettering, it shows their names, dates of birth, and how old they were when they were born. The time was right to scatter our second son’s ashes, which we did on the lawn in front of the memorial plaque. Now they are both together, and it feels like we’ve come to the end of this particular chapter in our lives.   

I want to move on now. I know I can’t speed things up, but I also know I don’t want to feel like this my whole life. My major remaining issue, which is really going to ruin my life if it doesn’t resolve soon, is the bitterness, jealousy and, I’m sorry to say this, the utter rage I feel towards family and friends who’ve had babies since we’ve been trying. The way I feel about my two boys, when I’m on my own or with adults, is an aching sadness. But when I’m confronted with the children of friends and family, as I’ve mentioned in the past, then the pain becomes poleaxing.

But I don’t want to always feel this way. I want to be a favourite, spoiling auntie, if only I can get over these feelings. When – if – I get to that point I’ll post again, as it will be interesting to know how long it takes.

Before I sign off, I wanted to make a note of a few things that I hadn’t mentioned in past posts. Firstly, it took me a whole year before I even showed my mother the photos of our first baby. And only after we had counselling for our infertility issues and I couldn’t hold back on my sorrow any longer.  But even then I couldn’t be completely honest with them. It took the arrival of our second baby and to be confronted with organising a funeral service for both of them for me to admit to my parents that we’d named our first son. That communication was terrible, and it’s my fault; I don’t know why it was so difficult, but it was.

Secondly, I’m still not back at work. I had our last baby end May, and it’s now almost November. I will go back to work though, scaling up my hours and days until I’m back full time. I’m not on anti-depressants, anti-anxiety medication or sleeping pills, but I would be if I hadn’t had this time off to digest what has happened to us. And also, I have had a lot of skilled counselling, which has proved invaluable and a big reason why I seem to have preserved a semblance of sanity.  There is a dearth of experienced professional psychological help in this area, but if you can find it, I recommend it to anyone.

                                                     

Time for reflection

I'd been feeling ok until last week, when my husband forwarded me an invite to his cousin's daughters two-year birthday party. I fell into a deep depression again, not helped by another email soon after which was putting a date in the diary for all my husband's family to get together before Christmas, since not everyone will be there on the day. That means three babies/toddlers will be there, and at the moment I see them as the 'ghosts' of the babies we thought we were having but never did. The pain is quite extraordinary. I told my husband that I really didn't want to go and he was ok with that, which relieved me. I hope I change my mind closer to the time, since I do realise I'm dividing him, not least the rest of the family, and it's not like I can make those children 'unexist'.

However, at the weekend, I read about the controversy that Ricky Gervais set off when he referred to 'mongs' - i.e. an insult to those with Down's Syndrome. He had a run-in with a lady called Nicola Clark, who is the mother of two girls with autism, who rightly took issue with his use of language. I'm now very alert to the lives of people with multiple children with disabilities, firstly because frankly, until my experiences, I didn't realise it could happen more than once. I started reading her columns in the Guardian Newspaper, and was drawn to one column where she discusses how she is reluctantly considering asking for one of her daughters, 14, to be taken into care, as neither she nor her husband can take much more of her violence and aggression. I started to read all the comments below her article, many of which are from people also facing a very tough time with their mentally disabled, but physically able, children.

Here, I reproduce one of the comments, which in my view is unbelievably harrowing:

``Let me tell you what we have spent this morning doing so far. We have put up 3 enormous pads, with attractive owls, animals and numbers on them (wipe down tough plastic) on the walls of my son's bedroom because his headbutting has smashed and cracked the plaster right through to the lathes.

So we are constructing what is basically a semi-padded cell.

The endless round of biting, headbutting, kicking, scratching, slapping, punching screaming, and utter destruction of our house has just become normal.

Imprisonment in the house has become normal too, only going out for food. Supermaket trips can be a bit hit and miss with our dear little 'Destructinator'.

He's doubly incontinent, doesn't speak, but at last he's in Special School which is great, because the insanity of life stops for just a few hours a day during the week. School holidays become terrifying, and already I'm getting upset over the 6 week Summer holiday.

Nicola, you are not alone in your family struggle to live with this. People who live daily with this can really understand how it gets to a point where you sadly have to realise you can no longer go on, you are breaking, after finally living at breaking point for years.

I suggest you try residential care as an assessment placement for a few months. See how everyone gets on, so that you can keep your options open.

I'm so sorry that it's come to this for you, but I understand totally how it is, and understand how it's become impossible to carry on.''

I suppose I'm trying to get my heart to accept that our boys, if they'd turned out physically like their father, would have become 6ft4 and 14st of mentally disabled adult male, and that's not a great situation to be in.

 If you have time, do read her article and the comments below - the link is here: 

http://www.guardian.co.uk/commentisfree/2011/mar/31/daughter-care-vulnerable-disabled-people

So, what now?

So now the enemy has a name: an unbalanced chromosomal translocation. So what can be done? We have the following options: First up, `try again' and *hope* nature will be kinder this time and create a baby with either normal or balanced chromosomes. Because they know what the problem is, we can be given a CVS from 11wks, when they can check the chromosomes. However, and I'm sure you're ahead of me on this one, this means that if the test comes back and the chromosomes are unbalanced, we have the choice of letting nature take its course or bringing things to a premature end. Again. Right now, the thought of ending a pregnancy a third time is almost too much to bear. Because this thing can keep happening over and over, I could be faced with taking this decision countless times. Argh!!!

Already, I have to look in the mirror in the morning, and the person who looks back at me is a Woman Who Has Had Two Abortions. Who is she? I never thought in a million years I would say that about myself. I thought that as long as I was careful and in a stable relationship, then surely I would have minimised my chances of having an 'accident' and being faced with a choice I'd rather not make. But envisage what has actually happened to us over the past three years? Never, never, never.

It has to be said that trying again naturally is the hospital's preferred choice if we do want a family. I get the impression that as long as we get a diagnosis before 14 weeks, then I should be pleased because I can have an op and that's the end of it. Personally, the fact that it's an operation rather than labour & delivery gives me no comfort whatsoever. In fact I preferred to give birth to them both. At least we got to see them and to cuddle them. In fact I would go so far as to say I preferred having my last boy later, precisely because he had got to the stage where he had layed down some fat and looked a bit more like a baby. Our first baby was still very young gestationally and had quite delicate, transparent red skin. Anyway, I digress. Back to options. So to recap, we have `try again & test at 11wks'. On a glass half-full view, because it's chromosomal, we have a 50/50 chance of it not happening again, so yes, maybe nature will be kinder and give us an unaffected baby.

Secondly, we can try IVF with so-called pre-implantation genetic diagnosis (PGD). This is where they do standard IVF, but before they pop any embryos back inside you, they take a cell and test it for your particular genetic or chromosomal condition. Only embryos free of your particular genetic or chromosomal condition are put back, and hopefully the embryo will take and turn into a live, healthy baby. Cursory research indicates that while it can and does work, there are no guarantees. There are all the usual problems associated with IVF, and in some cases ALL of the embryos they manage to create are found to be affected, leaving none to transfer. Another factor is the cost. IVF with PGD in the UK costs around £10,000. Yes, 10k. And no, you don't get your money back if it doesn't work. Some people are able to get NHS funding for between one to three cycles, but not everyone is. And in these days of budget cuts, the NHS is slashing spending, right, left and centre, so I'm not positive we'd get funding for this one.

Thirdly, we can adopt.

We can also call it a day and give up, otherwise known as getting on with our lives. Finally. I do favour this one at the moment, I have to say. The past three years have been so exhausting and traumatic that to risk it continuing seems to be bordering on madness. If we go the natural route, I don't want to be faced with making a decision a third time. Just writing the sentence makes me want to vomit. It just seems like a really irresponsible thing to risk.

If we go the IVF route, I keep thinking of the worst-case scenario: don't want to reach 40, or whenever I hit the menopause, and to look on back on my life and realise that 1) we've done nothing but IVF for the past X years 2) we are now broke 3) we are barely talking to each other, 4) and to top it all we are still childless.

Oh well, I better hope that the worst-case scenario doesn't happen, as we've discussed it and we want to go down the IVF route. I'll keep you posted.

Finally, a reason WHY

The chromosome test DID come up with something. It’s a new test, called array CGH, and it turned out that both boys had something called an unbalanced translocation of chromosome 6 & 9. The geneticist rang to let me know. I was SO relieved. We finally had a reason for our three-year nightmare.


So what is an unbalanced translocation? We each have 23 pairs of chromosomes, one set from our mother and one set from our father. In our babies’ cases, bits of chromosomes 6 and 9 had broken off and swapped places. But one boy ended up getting too much of chromosome 6 and not enough of chromosome 9, and the other boy had the opposite problem, too much of chromosome 9 and not enough of chromosome 6. They found the problem first in our second baby, and they then tested tissue they had kept from our first baby’s 2009 post mortem, and this showed the same issue. Because that both boys had the same issue, this meant that either myself or my husband had a balanced translocation of chromosomes 6 and 9.


And we have just found out that it is me.

Aftermath

Our boy’s post mortem confirmed severe ventriculomegaly, and a narrow acqueduct in the midbrain, and 'neuronal heterotopias in one dentate nucleus in the cerebellum' which we were told meant that certain brain neurons had not moved to the right part of the brain as they should have done by that stage, another sign that his brain was not well.

Our geneticist ordered a test of the L1CAM gene, mutations of which could explain our babies’ symptoms. There was a condition, x-linked hydrocephalus, which could explain both babies’ symptoms. This was a genetic condition which is passed by the mother and affects only boys. However, this gene turned out to be fine. We were told that that was it, there was nothing else they could do. There was one more chromosome test they were going to run, but they didn’t hold out much hope. All they could say was try again and hope that it didn’t happen again. By this time we were both totally put off ‘trying’. Yes, let’s conceive a baby we’re going to have to consider killing – wow, what a turn on.

Head vs Heart

Getting these diagnoses is all very well, and perhaps the medical profession thinks we should be jumping for joy at having averted such a terrible life with a disabled child, but the reality is not as neat as that. The reality is that in ending the life of a baby you want and love, a part of you dies for ever. It may be ‘for the best’, it may well be the case that you are saving him or her from a life of suffering, but what’s right on paper is not necessarily what’s right in your heart.

Today, I still torture myself that I should have carried him to term. At least I would have something to do, something to focus on, instead of the utter emptiness and pointlessness I feel in my life currently. But then, if he’d suffered as we’d feared, then that would be quite selfish.

What this sort of experience does is utterly destroy your relationships with others who’ve managed to have children with apparent ease. Between our first baby and our second, my sister in law announced she was pregnant. My rage was extreme. I just thought, HOW DARE SHE!!!!! Why doesn’t she get to sit in a bath while it fills up with her own blood? Why doesn’t she get told that her baby’s brain is f***ed up???? Why does he get to live???? While most of my rage has been aimed at her and the baby, it now extends to all friends and family who have had a baby. We are being left behind, and there is nothing anyone can do about it. I do everything I can to have as little to do with them as possible. The pain is too great.

When you’ve taken the decision that we have done with our baby, then outsiders are obviously going to think the following: that the baby was unloved, unwanted, an inconvenience. When in fact, the opposite was true. Both our babies were loved, both were wanted, neither were an inconvenience. Yes, I am angry. With life. With fate. With myself.  I miss them and wish I’d kept them. I wish both had been ok. But they were not and we thought it best for them, *not for us*, that they not suffer. Someone once asked me why I wanted a perfect baby. I hadn’t realised I wanted a perfect baby. But on reflection, a baby within the ‘normal’ range? Yes. Until our experiences it hadn’t occurred to me that any other outcome was possible.