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I start off with a positive and hopeful title. Surviving. I'm not sure I'm surviving just yet, though I'm sure that will come in time.
*Child Ment*
To anyone who may read this, just a warning that it will include mention of my living children as well as my angels.
So, I guess I'll start right at the beginning. DH and I always wanted children. We talked about 'our children' within weeks of getting together. It just seemed such natural conversation. After we got married we wanted to wait a little while to have some time together, to move from our rented apartment to a house suitable to raise children in and to get some job security for me, since we got married right after my college graduation (DH already had a steady job). So, in September 2002 I had a secure job, we had just moved into our new house and things were settled. I was working in the next town at that time so we decided I would come off bc to allow my body to 'normalise' for a couple of months and then when I rotated through to the city we were living in we would start actively TTC. We read all the books, modified our diets, started prenatal supplements, cut out alcohol etc etc so that we would both be in prime physical condition to make our baby.
February 2003 rolled around, I rotated through to work locally and we started TTC. It was exciting!! To think, each time we did the baby-dance we might actually be creating a life! Wow. Mindblowing! Four weeks passed from my AF, I had a bit of light spotting. We started to think maybe this is it. People sometimes get light spotting when their period would have been due, don't they? We decided not to test just yet, but waited. After a week, AF arrived. Ok, so that was weird, but never mind. It was probably a bit optimistic to think it might happen first time around. On to March 2003, still having fun with the BDing. Spotting came again. Hmm, this didn't used to happen before BCP in the lead-up to AF, but oh well... AF never came. At CD36 I finally POAS'd and it was BFP!
26th April 2003
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We were very excited. Here we are with a BFP, I thought naively, even if it all goes wrong at least I know I can get pregnant. What a strange thing to think on reflection.
I booked in to see my GP. He confirmed that my EDD was 26th December. Poor child, I thought. He/she will be mad about being born at Christmas. I figured maybe it wouldn't be too bad. After all, don't first babies usually come late. Maybe (s)he wouldn't be born until the start of January. That wouldn't be so bad, would it?
The next couple of weeks were a bit strange in some ways. We talked about 'the baby', thought about whether we should go on vacation that summer or whether it would be best not to. I had these odd intrusive thoughts about telling people we were having a miscarriage. I don't know if it was some sort of strange intuition or maybe I'm just a pessimist at heart. Perhaps my mother's history of 6 miscarriage losses had cautioned me a little. I don't know.
I had a bit of spotting around 6 weeks. Not much just the odd tinge of pink on occasions when I wiped. I worried a little, but DH and I talked and we knew it could just be normal and seeing as there was so little and it wasn't consistent, we just continued on.
The spotting continued too though and I did worry and those thoughts of telling people we were having a miscarriage just became more and more intrusive. Eventually I called up my GP. I told her I was pregnant and that I had been spotting on and off for a couple of weeks. She told me not to worry, it was really common in pregnancy and didn't necessarily mean anything was bad. However, she said, the local hospital has an Early Pregnancy Unit and this is exactly what they are for, so we might as well use them and ask them to see you and see what they say. So, we got an appointment for the next day. I was 8w4d.
The nurses at the EPU were really nice. We went through some paperwork first - how long had we been TTC, when was my LMP, when did I get my +HPT etc. We then moved across the hallway for a scan. They said that because I was over 8 weeks I could have an abdominal scan. The tech pushed on my belly with the probe, stared at the screen, brow furrowed. She eventually told me she couldn't see so well and would I mind having an internal scan. I popped out to empty my bladder, came back through and got undressed, wrapped myself up in the scratchy, white sheet and positioned myself on the couch.
Then came the weird internal scan wand. Looked a bit like I was about to be probed by an alien! More pushing and prodding and frowning at the screen. I wasn't feeling very reassured at this point. Eventually they told me that there was a gestation sac. Which, strangely, comforted me at the time. Hey, I'm not making this up after all! It was only measuring about 5.5w though and there wasn't any heartbeat. It was quite possible, they told me, that I wasn't as far along as I thought I was and it was just too early to see the heartbeat. Best thing to do, was to arrange another scan in 2 weeks and take it from there.
They sent me off with a bunch of paperwork, telephone numbers, what to look out for and who to call if I had any problems. We got to the end of the corridor before I burst into tears. DH tried to comfort me. He had taken what they said about it being too early to heart. I knew my dates weren't wrong by 3 whole weeks though. They just couldn't possibly be. I knew it was over.
I was 8w5d and it was my mum's birthday.
We went home - I had the day off work for the appointment and DH stayed off because I seemed so upset.
That evening I started bleeing heavily. It was happening.
Next morning I sent DH off to work. I needed to be by myself. I phoned my boss at work and told her what was happening. She was very sympathetic and told me to look after myself and that she would tell people I was off sick and there was no need for them to know why. At the time that seemed like a good idea, so I went along with it. I called up the EPU to tell them what was happening. They asked if I wanted to come in. I told them not unless they really felt I should so they told me to look out for excessive bleeding or pain and call them back if I needed to.
I sat on the couch most of the day, a heat pack on my belly and another on my back. The cramps were horrible. I was bleeding and losing clots. I called my mum. I hadn't called her the day before because I didn't want to ruin her birthday, but I wanted to talk to her now. We hadn't told anyone about the pregnancy apart from one very close friend, and my parents. Because of my mum's previous miscarriages, I figured I wanted her support if anything went wrong, so I told her when I was 6 weeks. I called mum and told her what was happening and I told her I was ok and not to worry. My poor mum was devestated. I think at that time she was more upset than I was. That evening DH phoned our friend, the one who had known about the pregnancy. I felt really sorry for him having to make that phone call, but I could not bear to do it myself.
I stayed home the next two days as well. More bleeding, more clots. Pain was less though and I figured, this isn't too bad. I went back to work after the weekend. My boss, true to her word, hadn't told anyone why I was off. That turned out to be the killer for me. My colleagues welcomed me back with a cheery 'feeling better now?'. How can you answer that question? I was SO mad at them, but they didn't know. How could they? I couldn't bring myself to tell them, so I just nodded and smiled, all the time thinking, no I'm not better, I'm dying inside and my heart is shattered.
I had great support through this time from my auntie. We kept in touch by email and had been really close when I was little. She had lost a baby to stillbirth at 26w the previous year, so I turned to her for solace and she was really comforting.
About a week after the first bleeding I was home from work studying for a postgraduate exam when I got a sudden increase in pain and bleeding. I rushed to the loo and there I passed the pregnancy sac. That was a real shock. I had thought that because the baby had died so early on there would be nothing to see and that the bleeding and clots was all there would be. I didn't even know what to do with this, my baby, still wrapped in his/her amniotic sac. I decided to bury my baby in the back garden under a magnolia. I was absolutely crushed. It was my 26th birthday.
Soon after I took my exam (and passed), went back to the EPU for a follow-up scan which was clean and DH and I started to pick ourselves up again. We figured, hey, miscarriage really sucks, but it's common and it just so happens that it struck us first time around. We will be ok.
We both did a lot of research online and found lots of statistics relating to the good odds of having a successful pregnancy following a miscarriage. We both felt ready to start TTC again right away and we knew that although they recommended waiting for the next AF, that was really only for dating, not for any medical reasons in the type of m/c I had had. So we half-heartedly started trying whilst waiting for AF.
I had a follow-up appointment at the EPU where they said all the same things and offered me the chance of having an early scan next time around for reassurance. They also checked my beta to make sure it was back down to normal, which it was.
AF arrived the following week and so we got back on the TTC wagon with gusto. We felt quite positive. Work was keeping us both busy. Life was good. I had started temping and found it quite reassuring to see the post-ovulation temp rises and know my body was doing what it should.
Three AFs came and went and then on 10th October 2003 I had again reached CD36, so I POAS'd
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BFP!! I even did it a second time to make sure. Still BFP! In fact, if anything the lines were darker than last time. Maybe that was a good sign. A sign that this bubs was sticking properly.
I hadn't told my DH I was going to POAS so I called him at work and asked if he could meet me at lunch. We met in an indoor ornamental garden and I showed him the peesticks. He said as soon as I'd asked to meet him, he knew what I was going to tell him!
We were both excited, but a bit more cautious this time around. We worried that we might lose this little bean too, but we thought, no, it isn't going to happen to us twice. Things seemed much better anyway. The lines had been darker on the HPT, I had sore boobs and was even feeling waves of nausea on and off. This was a much better sign!
I made the appointment with my GP again. My EDD would be 11th June 2004. A summer baby. Perfect. I would get to have time off in the nice weather and the baby would have a birthday half-way through the year. Things were definitely looking up.
I had a random telephone call from a midwife at the local hospital the next week. She had looked through the information my GP had sent, noticed that I had had a brother with Down Syndrome and asked whether I wanted to go in and talk about extra screening tests. I don't know why this didn't come up first time around, but, I guess that isn't important. Off I went to meet with her. She explained that on rare occasions there can be a problem with a parent's genetic make-up that makes them more likely to have a baby with Down Syndrome. On hearing about my mum's recurrent miscarriages she thought there was a chance that might have been the case with my parents as many babies with Down Syndrome don't develop until term and are lost to miscarriage. She offered me karyotyping which is a blood test where they examine the chromosomes and see if they are normal. She said that they would primarily be looking for the problem that would cause an increased risk of Down Syndrome but that it was always possible that they would see other abnormalities and that if they did, they would tell us about them too.
DH and I talked it over. I spoke to my parents who said they had been genetically tested and hadn't shown up the problem in them. I decided to go ahead and have the test anyway. I figured it would be nice to have it come back negative and know I was in the clear from that. I had the blood test a few days later. The results would take two weeks to come back.
Things with my pregnancy were progressing well. My boobs were starting to look a little swollen, the nausea was still there on and off and, most importantly, there was no spotting. I made my first appointment with my midwife and received my hand-held maternity notes. Oh the excitement. All these things I never got to do first time around. Finally I was 'properly' pregnant. I called up the EPU to tell them I was pregnant and ask whether I could get the early scan they had mentioned in my follow-up appointment after my miscarriage. They booked that in for 4th November.
We duly rocked up to the EPU for our appointment. It was a bit strange to be back there in the place where we had received such terrible news before, but we were positive that things were going well. I was nauseous, my boobs were big and sore, I had had no spotting. This was a reassurance scan. As before, we filled out the paperwork with dates of LMP and +HPTs. The nurse was very bright and cheerful. She told us she appreciated we were nervous and should we just get on and do the scan. Once again we opted for the abdominal scan since I was 8w4d. They put the lights out, I squeezed DH's hand, the tech pushed and squinted at the screen. I was fixed on her face, searching it for any hint of what she might be seeing. Then my heart sank. She told me she couldn't see very well and would I mind having an internal scan.
I crossed the corridor to the bathroom with my heart in my mouth. Surely this couldn't be happening again. Surely when she did the internal scan, everything would be ok. The wand went up, more pushing and prodding, then she said the words we were dreading. I'm very sorry, but I can't find a heartbeat. She spun the screen around and showed us our baby. There was the sac, the little bean blob in the middle, but no flickering in the middle where the heart should have been. I looked across at my DH. The poor man was sitting with his head in his hands. I have never seen him look so crushed in my life.
They showed us into the little side room again - the one where they take people who have had sad news. They asked us to wait and speak to a doctor. We waited, probably for an hour, but eventually someone came to talk to us. They said they were sorry, they asked us whether we wanted any treatment and they reassured us that 2 m/c was still in the category of just bad luck and the odds were still in our favour. They offered us genetic testing of the baby to see whether there was a reason for the miscarriage.
I knew I didn't want to have surgery if I could avoid it and I figured that the option of waiting 2 weeks to see what happened was just too much. I felt like we had wasted enough of our time with this pregnancy when our baby was already dead and I just wanted to be able to move on. We opted for medical treatment which involves taking a pill to block the pregnancy hormones and then 48 hours later having vaginal pessaries to start the contractions (a bit like having an induction). They asked if we wanted to go home and think about it, but I just wanted to 'get it over with'. They gave me the tablet that same day. Swallowing it was the hardest thing to do. Although I knew there was no hope, that the baby's heart had stopped beating, it still seemed a betrayal to be 'evicting' him/her from my body.
We went home and I cried and cried and cried. I sat in the rocking chair that we thought might one day be moved to the nursery to rock an infant and I just wept. We had told our close friend from before and SIL had guessed I was pregnant when we saw her the previous week. We hadn't told either set of parents. My mum had been so devestated after my first m/c that I couldn't bear to tell her about another pregnancy until after the reassurance scan. I had to tell her now. I called my parents. They were completely devestated. My mum couldn't believe it was happening all over again like it had for her.
I went in to hospital 2 days later for the induction treatment. I sent my DH to work because I knew I had to go through this, but I didn't want him to have to go through it too. It was a 7:30 check-in. They got the pills in me. I layed around and listened to music, mainly songs from Disney animation films. I cried. I ate jelly beans. I waited for the contractions. Lunch-time came and went. I ate a dried-out sandwich. It tasted like cardboard.
The cramps started after lunch. They came in waves like contractions. I had pethidine for the pain. I remember thinking at the time that it was a completely useless pain-reliever but that what it did do was make me not care about the pain. After about an hour I passed a small perfect ball. My baby coccooned in his/her amniotic sac. I took a photo. Perhaps a strange thing to do, but I wanted to have something tangible to keep to remind me that this baby was real, especially as it would go for genetic testing this time.
One of the nurses came into my room to tell me that the midwife I'd spoken to the previous week about my own genetic testing had phoned to say she had my results and ask whether I wanted to speak to her then about them or make another appointment in the future. That didn't sound like it would be good news! I told them to send her up to me. I might as well talk to her now.
It was late afternoon by then. The midwife came. She said she was so sorry I was going through this again. She asked me if I wanted my results. She explained that they hadn't found the problem relating to Down Syndrome but they had found something else. I had a balanced translocation between chromosomes 9 and 16. At some point, possibly during my conception or possibly further back in the family tree, when cells were dividing prior to the meeting of egg and sperm a little chunk had broken off each of the two chromosomes (9 and 16) and swapped over and stuck back on. This could quite possibly be the reason for my miscarriages and means that any child we did manage to carry to term was at risk of genetic abnormality. They couldn't be sure precisely what that abnormality would be, but it was likely to include multiple medical problems and severe learning problems. My DH arrived on his way home from work during all of this explaination. I was still a bit high from the Pethidine and after the midwife left, proceeded to explain it all again using different coloured jelly beans to represent bits of chromosomes. It seemed like a good idea at the time!
We got out of the hospital around 8 that evening and headed home to digest everything that had gone on.
The aftermath of miscarriage #2 was not pleasant. With the added blow of the genetic diagnosis we felt like we'd been hit head-on by a goods train. I blamed myself since it was me that was 'defective'. We both worried that we might never get the chance to have any children at all, or that if we did they would be born with many problems to overcome.
As before, I had a follow-up appointment at the EPU. The nurse told us that they don't usually offer testing until after the third miscarriage, but given that I had shown up a genetic problem, we could have all the other tests run if we wanted to. We opted for that. I had a whole panel of clotting screening and immunology tests done and yet another internal ultrasound scan to make sure that my womb looked normal in its non-pregnant state. DH had his genetic testing done. Thankfully everything else came back normal.
We had an appointment with the genetic counsellors. They explained that they hadn't been able to get a result on our last baby. Apparently the culture doesn't always work. That was a real blow. I had been looking forward to at least knowing the gender. Having not been able to find out what my baby would have looked like, what personality they might have had etc I was really, really looking forward to at least knowing if they had been a boy or a girl. But no. It wasn't to be.
They went through the details of the translocation again. They told us that it was unusual to have a swap over between two of the larger chromosomes like I had because it usually happened with other particular ones. They reassured me that because I had all of my completely genetic information that there weren't any health implications for me apart from the reproductive ones. They explained again about the possible pregnancy outcomes which were;
1) normal genetics; likely healthy child.
2) balanced translocation like I have; likely healthy child, but with reproductive issues in their future.
3) unbalanced translocation where the baby would have too much of one partial chromosome and not enough of the other. This could mean a miscarriage, a stillbirth or a livebirth depending on what exact information was duplicated/missing. A livebirth in these circumstances would also mean problems, but they couldn't be certain exactly which ones. However, they almost always include multiple organ defects and severe learning problems.
She then went on to tell us what they could offer. Obviously there was no treatment for me or preventative treatment for any baby conceived. What they could offer us was information. We could choose to have a CVS or amnio to find out in advance about the baby's chromosomes, either to be fore-warned of a possible problem or if we so chose, we could decide to terminate if they were unbalanced. The other option was to have IVF with pre-implantation genetic diagnosis, where they would test any embryos created and then only use the ones which were normal or balanced. We would have to pay for that out of pocket though and travel quite some distance for the treatment. They estimated the cost to be in the region of $8,000-10,000.
They also said that looking at our family tree, which contains an unusually high number of miscarriages and stillbirths, it is possible that this problem is further back in the family too. They gave us information to give to the wider family containing the details of the specific problem I have so that they could use it to be tested if they so wished.
DH and I talked and thought and looked up information online and in medical libraries and eventually decided that we would give it 3 years to try and get pregnant successfully ourselves and if we were still getting nowhere then, we would opt for the IVF/PGD option if we could manage to afford it. We figured over 3 years we would hopefully average at least 2 pregnancies a year so that would be 6 tries to get it to happen.
We started TTC again, but it was not with the same gusto and excitement. There was all the sadness of the babies already lost and all the fears about the uncertainty for the future to work through. Trying to get pregnant was more like a chore than a joy. I used to lie in bed at night and worry about getting pregnant. Would I have another m/c? Would I opt for an amnio? What if that caused a miscarriage and the results came back as normal after all? What if I didn't have the amnio? Would I then just worry for the entire pregnancy? How in world would we afford IVF? Would we always wonder 'what if' if we didn't try it? What if I never got to be a 'proper' mom?
These thoughts raced round and round my head like a never-ending loop. We went through cycle after cycle, AF showing her ugly face each time. We tried a whole variety of methods and timings for DTD. I kept temperature charts, I took OPKs. Everything seemed to point to the fact that I was ovulating, but there was no pregnancy forthcoming. At one point I POAS and got a faint positive, but then I realised it was an OPK and not a HPT. The blazing BFN that following was heart-breaking.
I really struggled with the fact that I had nothing other than peesticks and one photo of a gestation sac to remember my babies. It felt like they hadn't existed in the greater scheme of things. No one else seemed to pay them much respect. People didn't talk to us about them. It was like their lives had been so short as to not count for anything. It was whilst on yet another trawl through the internet that I found the site for the Church of the Holy Innocents in New York. They have a Book of Life there dedicated to babies who have died before or at birth. I applied to have the names of my two angel babies inscribed in that book and received a certificate for each of them, bearing their name. It felt strange to me that in a big city on another continent, the names of my angel babies, known only to me, were inscribed in a book, in a shrine where people came to pray for them. That brought me a great deal of comfort as it was an acknowledgement that they had actually existed.
Around us our friends and families were having their children. It ate us up inside every time we saw DH's niece and nephew. Some close friends and family even gave us a hard time, expecting us to 'be over' our losses. Not understanding how difficult it was for us to be around small children. Telling us what had happened wasn't that bad after all and we should pull ourselves together and not be so negative about it. Clearly, these people didn't have a clue!
It was coming up on a year since we had started TTC again. Still no pregnancy. I started thinking about whether we should see a fertility specialist. It seemed just too much to have to start adding fertility treatments in on top of everything we had already been through. I had another postgraduate exam coming up, so we put it off until after that was over.