In part 2, I left you at the point where I’d had the double amniocentesis for my twins conceived by IVF PGD. If you missed it, you can catch up on the start of my quest for a healthy family, and if you missed why this is necessary for us, you might want to read the story of losing our daughter.
Whilst I was waiting for the results, we had our 20 week scan, and discovered we were having a boy and a girl – perfect! Also at this time, my daughter lost her battle with Tay-Sachs Disease and died just before her third birthday. I was devastated, even though we were expecting it. I took courage from the life growing within me. I desperately wanted to know the results from the test, every time I chased them they said they were growing cells to test. Two days after my daughter’s funeral, I got a phonecall from Guy’s hospital genetics department. They said the results weren’t looking as expected, one of the twins results looked as if it was affected by the disease. They told us we’d both need to come to London to test our blood for the prescence of a pseudo gene which could be affecting the results. We traveled in near silence, desperately clinging to the thought that this blood test would explain the reason for the result. We’d organised a birthday party for family before Amy died and wanted to have it still. We hadn’t told anyone about the possible results, that party was painful for me, hiding my fears and still in mourning. I think everyone just thought I was withdrawn because of losing Amy – if only.
Early the next week we got a bombshell – one of the twins was indeed affected. The PGD test had misdiagnosed a healthy baby and consequently I was now carrying a healthy twin and one which had Tay-Sachs. My worst nightmare had come true. Again, we had to tell all our friends and family. I couldn’t cope, I think we told one or two people (each set of parents) and told them to relay it. I felt awful, letting down everybody again. I told the clinic of course, and it all had to be investigated, they’d never had it happen before, of course it had to happen to me! The only explanation they had was that when they were testing the cell taken from the embryo, it had got contaminated with some of my DNA. I began to distrust all tests and not believe anything. I was now 22 or 23 weeks pregnant. Soon the babies would be deemed ‘viable’ at 24 weeks, if they were born they had every chance of surviving. Having just lived through having a child with TSD and just burying her, there was absolutely no way I wanted to go through that again, or put a child through that. I asked which one it was, they said it was twin 1 at the time but they can move round. It was the girl baby – I’d had a feeling it was, she didn’t move as much as the other one and wasn’t as active on scan, again I’d had a nagging feeling, like I did with Amy that was hideous to be proved right.
On discussion with the genetics and obstetrics team, we decided to opt for selective termination. I wanted this done as soon as possible, so that there was no chance we’d be faced with looking after another child with the disease. This wasn’t as simple as I thought, because if we did it too early, there was a risk of going into labour and putting the other healthy twin at risk. They said they would do it at 32 weeks, which seemed an eternity to me. I stopped work having only just gone back, terrified of going into premature labour. When I was about 28 weeks pregnant, I went on a pre-arranged trip to wales with family, but hated going too far from London, I was constantly thinking about if I went into labour, I needed to get to London as quickly as possible for the termination to happen before they were born. You can see from my face how hard it was for me, although I enjoyed being around close family and to have their support, but being far from home was a strain.
I knew from my experience as a midwife, that second labours are quicker so my worst fear was having a fast premature labour and giving birth to a live child affected with Tay-Sachs and have to look after her. I made a plan in my mind if this happened that I would have her adopted or fostered, but then I didn’t know if I could go through with it, knowing she would be alive in someone else’s care, when I was the one who knew how to deal with the disease. I constantly went over this in my head, going through different scenarios and what I’d do. We met with our local paediatrician, who’d met us with Amy, and went through what we’d do if I gave birth without having had the termination, we decided on no heroic measures of resuscitation for her, but we couldn’t withhold nutrition (we wouldn’t do that). It was so hard because I knew from experience that children with Tay-Sachs are born looking and acting pretty much as normal and it’s only after a few months that any differences come out, then they deteriorate mentally and physically.
To cope with it, and I must stress everything I write here is my way of dealing with things, it’s not the wrong or right way, there is no right way of coping, just what works for you, so if you are going through or have gone through child loss, please don’t think you need to process it in a certain way. I immediately planned for a single baby, got all boy things and decorated the nursery in a fish and sailing boat theme. It may sound cold hearted to some, but for me it was my way of dealing with it. Even though I could still feel both babies move, as far as I was concerned, she died the day they told me. It was horrific having thought I was going to have three children (if Amy was still alive) to now only expecting one. I spent my time mostly at home apart from that week in Wales, entering online competitions and watching TV. I didn’t see many people, got very bored and went stir crazy!
A week before the termination was scheduled, I went in to hospital to have steroid injections to mature his lungs. I had gestational diabetes and needed to be on a drip, as the steroids can increase your blood sugar. I insisted on only monitoring the healthy twin. One of the doctors didn’t read my notes properly and thought both twins were being terminated, I’d agreed previously that if I didn’t go into labour prematurely that I would just go to full term, he started saying I couldn’t and that I was at risk of clotting – we managed to sort it out but it was a stress I didn’t need.
Finally, we got to the day of the termination (warning, I’ll be describing it). I’d been half existing to this point, just trying to get through it. Quite honestly, that was the worst time of my life and I wouldn’t wish it on anybody. On one hand I was still looking forward to having a baby but it was still fraught with worry. I don’t feel I was able to grieve properly either. Knowing what I was going to do but having no other option was awful. They scanned me, made sure they identified both babies – if there was one saving grace it was that they were different sexes, so could be identified easily, I’ve no idea what would happen if they were the same sex. They identified her heart, and passed a needle through my stomach directly into her heart, where they injected pottassium straight in to stop it. They also took blood from her to confirm DNA. They then scanned the other baby and I waited for a while in a waiting room. Although it was an awful thing to have to go through, I felt relief that it was done and I wouldn’t face bringing a doomed life into the world. My little boy was wriggling about happily and we went on our way.
I knew there was a chance I would go into labour, so I’d got a bag ready and tied up any loose ends at home, got some small baby clothes just in case. Nothing happened, it was done on a thursday. I’d waited to buy things until it had been done, so then I arranged with my Mum the following tuesday to go and get the buggy I wanted from Bluewater shopping centre, an hour’s drive away. The Monday night I went to bed as normal, but had an uncomfortable night, kept tossing and turning, my back was hurting. In the morning I had a bath and felt better, so decided to still go – I really wanted the buggy ordered! I was now 32 weeks pregnant. In the car (I wasn’t driving, my parents were), I felt my back hurt and release. I thought I’d better time these feelings – every 10 minutes. I kept quiet, I’m good at that. I only speak when it’s necessary! We got to John Lewis and ordered the buggy. The new food hall had just opened, my Mum wanted to have a look, so down we went. I felt really cold, the pains were now definitely there but I think I was in denial that it might be labour, although I had warned my husband in the morning that there was a chance it could happen today. My Mum was wandering about looking for weird ingredients for a Rick Stein curry or something, and I remember struggling to keep up with her. I caught up with her and she could see I was struggling a bit so we headed back to their house for lunch. I tried to eat, still felt really cold on a summer’s day (boiling hot august day of course) and lay down. I thought maybe I had a kidney infection. Yes I was a qualified midwife at the time, I told you I was in denial! I wanted to retreat into my shell so I decided to drive myself home and get in the duvet where everything is safe. I drove the short distance, getting pains on the way. I thought if I could get warm it would all go away – I wrapped myself in the duvet and immediately felt better. The pain went – bliss! Maybe it was a kidney infection – oh no, wait, it hadn’t, it came back with a vengeance!
There was no denying it anymore, I rang my husband, who was working on a boat on the river! He got home pretty quick, considering, I think he had a dramatic five minutes and managed to say, ‘My Wife’s having a baby!’. I rang the hospital (where I work) and went in, it was broad daylight and as my husband parked the car, I waited, having a contraction and leaning against the wall, passers by asking me if I was ok! We timed it right, there was one room left on the labour ward, it was really busy. I’m a private person so it was embarrassing going in, but they were all very supportive as I knew they would be. I’d had talks with the midwife managers, mainly because I just didn’t want to have to keep going over my previous history, it was so painful and still so raw. I’d asked my husband to grab my bag, meaning my handbag with my phone in it, so I could call my Mum, but he left it behind – lesson learned, don’t leave things to the OH when in a crisis. I was still hoping things would stop or turn out to be false labour or a kidney infection (!), but an examination confirmed I was not only in labour but 6cm dilated! Very different from my first labour. They scrabbled about trying to get a drip in, as I’d hamorrhaged before, plus I was having twins. Things went very quickly, and soon I was feeling the urge to push. We’d made up our minds that we didn’t want to see the baby girl, I was frightened, to be honest, she’d been dead inside me for a few days and I didn’t want to see what she’d look like before getting a description, then I would decide. I wanted her taken away. Once I started pushing and when they told me she was coming, I closed my eyes and clung on to my husband, who buried his face in mine, he didn’t want to see either. I felt her come out, and only opened my eyes when I confirmed they’d taken her out. Again, this may seem strange to some people, it was how I coped.
Everything seemed to slow down at this point, we had paediatricians, midwives and doctors in the room, my contractions slowed right down and I suddenly felt very exposed. I put a sheet over myself. I remember the doctor put up the hormone drip, syntocinon and kept increasing it, like we were in a massive hurry. I kept saying my waters (second bag of waters) had broken, as I kept feeling a gush of fluid, but it was blood. The contractions began coming again, and then his heartbeat was getting distressed, I wanted to desperately have another vaginal birth, the doctor kept examining me for seeming no reason, I told him to F**k off, a lot and he stopped. All of a sudden I was presented with a consent form, I thought I was going to theatre for an instrumental delivery (Forceps, ventouse) but he said c-section – I didn’t want it, begged for forceps, but he said the head was too high. I was in incredible pain, and in theatre it was such an emergency to get him out alive that they knocked me out with a general anaesthetic.
I came to, and was full of questions – was he ok, was he breathing on his own? My little boy was fine, in special care with just a pressure breathing tube called CPAP on, he weighed 3lb 1oz. I immediately wanted to go and see him. My mother in law had come in and she went and got my bag, somehow I phoned my parents, they couldn’t believe we’d been having lunch together earlier and now at 6pm I was phoning to say I’d given birth! They came up too and we all went to see my precious healthy baby boy. I got wheeled through on a bed. He was so tiny! I was expecting him to be small and I’ve worked in special care but your own baby – well that’s something different entirely. He’d pulled off his tube and decided he didn’t need that thank you very much, and I fell in love instantly. It’s strange how I wasn’t even awake when he was born, but I knew he was mine, I’d been bonding with him since he was an embryo. I could hardly keep my eyes open, I would have stayed by his side if I was allowed but they wheeled me back.
All I had overnight was our digital camera with 2 photos on it and whenever I woke up I turned the camera on just to check what he looked like again. My husband had gone with him to special care and I’ll never forget the tenderness he spoke with and how he acted that day. In the small hours of the night, it hit me about his twin, who I’d named Elouise Hope. I wanted to see the pictures they’d taken of her. She weighed slightly more than her brother, looked similar, very red and slightly discoloured, I was shocked at her appearance. There was a full body photo of her, without clothes on that was the worst, I’ve since destroyed it. I didn’t want to see the body or hold her. I know people say you should as you might regret it, but I never have. There was a photo of her face with a hat on, I’ve kept that in with Amy’s things that we keep in a chest in the garage. I don’t look at it, but I like to know it’s there. It wasn’t long after Amy’s funeral and I absolutely couldn’t cope with another one, my mind just couldn’t do it. My family registered the death for me, and the patient liason office arranged a cremation for her. There were a few difficult phonecalls I had, but the majority of things were sorted for me. I felt like the crematorium may judge me for not being there but I just couldn’t. I drive by there all the time and I wonder what they did with the ashes. I have a scientific mind so I know it was just the physical body. Whilst I was in hospital I found it difficult to sleep and I would imagine and half dream that she was in the cupboard next to me. Thankfully those thoughts went away.
The first time I held him, the day after he was born!
I started skin to skin early
After a few days and a blood transfusion, I was well enough to go home, my little fighter stayed in special care for just under three weeks, breastfed after a week defying the odds, and once he was being fed independently, they let me take him home. He has continued to thrive, I was still watching him like a hawk in case he developed the disease (I think I was right to be paranoid after everything we’d been through), but he was fine. I delighted in every milestone he met and still do. He’s 7 now, he’s called William in case you didn’t already guess! He knows about his twin, I told him when he was about 4, I didn’t want any awkward revelations when he was older, and when you’re young you just take it in.
William now, healthy and happy, my amazing miracle!
It’s always a bit weird when I talk about him being premature and people ask why – I don’t go into all the details, I say he was a twin and we lost one, but I feel bad when people are sad for me, they don’t know I terminated it, but I still lost her, just in a different way. For a while I didn’t like seeing twins anywhere, especially boy-girl twins, I was jealous and angry that mine hadn’t worked out, but this has faded and although I still wonder what might have been, there’s no point in dwelling on what I can’t have. As soon as he was out, I wanted another child. Going through all that loss in a short space of time made me extremely broody. In the next part, I’ll tell you about our next little IVF miracle!
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