Pregnancy Gone Bad
This follows on from the story of the first trimester of my pregnancy which can be found here.
WARNING – Contains graphic medical details and scan images
On the 16th July 2008, I made the following journal entry:
Unfortunately, my big NHS scan isn’t until August 21st. Over 5 weeks away. I am just starting to feel the baby kick; I cannot go another 5 weeks only to find he or she is not viable. I am starting think about little else – I have a sense of foreboding but I had that with Bethan so I am trying not to put too much stock into that, but still. I don’t want to look back on my time here in the US as a happy, naive time not realising my baby was doomed – I would want to know now rather than afterwards. Less time to get attached. What with the loss of dad this year I need to minimise any further risks to my sanity. And of course if baby is fine, then I can relax a lot more!
Which is why I am going to fork out a small fortune and get a big ultrasound here in the US tomorrow afternoon. Top quality equipment and some of the best doctors in the world at a top-rated high risk clinic in San Francisco as recommended to me by a friend I will be meeting for the first time on Saturday. If anyone can spot something wrong, they will. They can check out the placenta too. Whilst QEH has reasonable quality equipment, it can’t really compare to this. If they can’t find anything wrong, I can relax. Even if something did happen afterwards, at least I wouldn’t be so damned stressed all the time until that point.
*********
Some of the replies I made to some comments:
- I am due a break but I thought that just a few days before my dad died too (I even thought to myself “How much worse can things get?” and had that answered) so I’m not relying on the universe to be kind too much right now!!
- We can’t really afford it – it’s not a “can’t eat if we do it” sum of money but it’s enough to cause problems and unless some extra money falls out the sky it’s not going to be great. Still, the funds are there, it’s just yet more borrowing. I would rather have a few more worries over a bigger debt than over the health of a baby.
On the 17th July 2008, 12pm in San Francisco, I left my place of work for the very last time.
Not that I realised it was going to be the very last time I left work, of course. I had lots of projects to work on and an appraisal overdue. It did cross my mind as I descended the stairs in the US office of the company I’d worked for for four years that something unexpected might happen, but I put it down to routine paranoia. The routine paranoia that was causing me to bunk off work for the afternoon in fact. I was 18 weeks and 3 days pregnant with my second child (gender as yet unknown!) and for the last few weeks something had been bothering me. Nothing physical, just routine paranoia, or so I assumed.
B and Steve in San Francisco
These thoughts were ruining the time our family was spending in California as Steve (my husband) had to be trained there for a month as part of his new job. At first I’d put the thoughts down to anxiety over my two previous first trimester losses, the 12 weeks of bleeding (now cleared up), the measles (often fatal for the unborn child), one of my dear friends succumbing to cancer, and finally, worst of all, the sudden loss of my dad just over a month before. Of course I’d be anxious!
12 week scan
The final straw came as a good friend on a forum due around the same time went for a routine scan and discovered the worst and her poor little boy Noah would never survive. That did it for me. I could not wait until we returned to the UK in well over a month to know if I was going to lose this precious baby as well. I decided I needed a scan just to calm my fears. My last proper scan hadn’t been since 12 weeks, and there was the measles to consider too, right?
I am still very good online friends with a due date forum of babies who were due in October 2006 like B was, even though she came in September. One of these friends lives in San Francisco, and so she recommended her perinatal group as one to go for to get a scan. So a few days earlier I’d rung them up. $800 apparently. Ouch! Money we could ill afford. And no appointments until next week. “Oh,” I said, “I guess that’ll have to do.” Then the secretary paused and said, “Unless you can come in on Thursday for 2pm as we have one free then?” A bit short notice, but I accepted. $800 on a whim. But I figured if it brought me peace of mind for our once-in-a-lifetime trip in America, so we could enjoy ourselves, then good. Money well spent.
The night before the scan, I had a very vivid dream that I was being wheeled through hospital corridors, in spontaneous labour, and trying to tell everyone that it was “too soon”. Not quite what I would have expected to dream about the night before a scan.. especially when I was more worried about the baby being faulty than premature labour. It was the least of my concerns.. I’d had a full term (well, within a few hours) birth before after all.
So I got into our rental car, and drove on my own the 40 mile drive North into central San Francisco. As I drove down the freeway, I admired the hills and buildings. So unlike where we live at home. The sun shone and it was a beautiful day. I somehow navigated through central San Francisco (only got hooted a few times!) and found where to park. I struggled parking the car in the dingy underground parking lot where there wasn’t enough space to get out of car if you were size zero, let alone with a bump. Not that I had much of one, thankfully.
I got in the lift and nervously made my way to the office. I was told to drink heaps of water, which I did so much I was almost making myself sick. I was terrified! Finally, just after 2pm, a very friendly lady came out and beckoned me to follow her. She was lovely. I flopped myself on the couch thing and she squirted the gel. “Do you want to know the gender?” she asked. Of course I did! We’d gone for a vanity 3D scan a week or so earlier and the woman there had been 80% sure it was a boy (which made my paranoia over the baby even more daft as she’d spotted nothing obviously wrong). The sonographer looked. “Well,” she said, “She’s all girl. Look!” and sure enough, she was. And Steve wasn’t even there with me for that moment (he couldn’t escape his training).
Fateful scan
She went on measuring bits and bobs, as you do, then said “Okay, she looks fine. Tiny bit of blood in her stomach, have you been bleeding?” which of course I had been. She said “There’s one last thing I need to check.. can you empty your bladder and come back as I’d like to do an internal?” which I agreed to. You’d think, after being told the baby was fine, I would be okay. No, I felt even sicker. The room was spinning. My heart was thumping as I went into the cubicle to do what she asked. I should be feeling relief, but instead I just felt terror even though my logical brain was shouting at me that it was all fine, I could stop worrying now.
I returned to the room. The sonographer was waiting. She began the internal. You know it’s bad news when the smile disappears. Again and again she kept measuring the same part. I tried to make jokes out of nerves, but they were falling flat. Fortunately, she wasn’t the sort of sonographer that measures and tells you sod all – she did tell me eventually. She said “Your cervix seems a little short.” “Oh.” I said, thinking it can’t be that bad. Bethan came early, so maybe I just have a slightly shorter cervix. She went on to say “It’s supposed to be at least 3cm, anything over 2.5cm and we’d be worried. I can’t get a measurement longer than 3mm!”
Now, at this point in time, I was not an expert on the cervix. All I knew was that it was supposed to be there and that if it wasn’t very long, then it was very bad news.
Finally, and paradoxically, I felt relief.
She called in one of the perinatologists, a lovely man who firstly discussed the rest of the findings of the ultrasound (all good!) before getting to the big bit. “I am extremely gravely concerned as to your cervix.” No sh*t. What on earth could I do about it? Astonishingly, he had an answer. He said, “I don’t know if you realised this, but this group of doctors has one of the best cervical experts in the States. I’m going to call him and get him to see you right now. DO NOT MOVE from that couch.”
He disappeared. I texted Steve, asking him to ring our travel insurance (organised through his work) as we had a Situation. A short while later, the room filled up with people. Doctors, secretaries, sonographers – I think everyone wanted to come see the freaky lady who had ended up on the doorstep of Dr. Cervix by accident. Naturally, my mind immediately wondered if this was a dodgy scam place where they tell you stuff is up and then charge you an absolute fortune to fix it, but everyone seemed far too professional for that. For a start, I’d seen nothing written in all capitals and badly spelt and no mention of millions anywhere. I did have, however, the receptionist coming in to ask for my credit card to pay for the scan!
In came the hero doctor, wearing a bandana, as if he’d walked straight off the set of an American Medical drama. Maybe he had, because here was my American Medical drama unfolding in front of me. First off, he asked how I knew to come to him. I tried to explain, and everyone just looked at each other. Finally, he let me in on the secret, and re-iterated what the other doctor had said earlier. He said, “I don’t mean to make ourselves sound great, but there isn’t a better place in the world you could have come!” Oh good, I thought. It’s about time luck was on my side. The odds of me getting the measles I’d calculated as something like one in a few thousand or something crazy.
The doctor explained. I was going to have to have surgery that evening – and he was going to do it. I was to go in a wheelchair to reception, get in a taxi and go straight to the hospital and lie down as soon as I got there and await him. Finally, I got the pressing question out – “What about my CAR?!!” After all, it was parked in an expensive, dingy underground car park! Thankfully, the less-medical sorts did scuttle off and arrange with the garage dudes something, but this endeavour did seem to involve a lot more talking and effort than the operation I was about to undergo. He disappeared. People demanded to take photocopies of my hilarious NHS paperwork, which they promptly broke the binder on. Whoops! I texted Steve again, telling him to get himself and Bethan (in a US daycare) up here now and to ring the insurers to authorise my treatment. Somehow, he did all this. And I got my taxi.
Me and B looking at Silicon Valley from halfway up a mountain!
The taxi driver looked at me a bit funny as I was wheeled to him in the wheelchair. “What’s up with you?” he asked. Somebody answered for me “She’s about to go into labour, so drive quickly and safely”. He looks at my tiny bump. I just shrug. It’s like I’m watching this on TV. I get into the taxi completely fine (I’d been walking 10 miles around San Francisco not 5 days earlier and hiking all over ) which boggles him even more. He then drives to the hospital at top speed, Bullit-style, over the hills of San Francisco. I remember my dream from the previous night where I’d been in labour but insisting to everybody that it wasn’t time as they wheeled me down the hospital corridors. How on earth could this be coming true?
I get to the hospital, pay the taxi driver, and make my way up to the ward. They tell me to get changed, steal some blood and disappear. For the first time in several hours I am alone. I look down at my phone. Just a few days earlier I’d posted a photo of me in front the Golden Gate Bridge, behind a cut tag, to my journal saying “Guess where I am!”. One of my friends replied saying “Sh*t I thought that was going to be a picture of a hospital then! Sorry.” Yes, that’s about the sum of my bad luck, that my friends just *expected* me to have this happen (our last holiday I spent 3 nights in hospital following an infection after a miscarriage). So, I took a photo of myself with the hospital gear clearly available and sadly uploaded it to my journal. I got lots of comments, hurray!!
The photo I uploaded to my journal from the hospital
It looked like my dream was coming true, especially when I realised I was surely about to be wheeled through a hospital on a trolley. This time though, I was not in labour.. but normally labour is what changes the cervix. Mine had just dilated on its own. Maybe my dream the night before I was dilating and my body recognised that and was trying to tell me. An interesting thought. Then again we all have bad dreams all the time and they don’t normally come true, but this one was particularly vivid.
Steve and Bethan finally arrived. Steve had an expression of expecting me to be looking different, but instead I just sat there and looked normal. After all, apart from a diagnosis, nothing had changed. I was as I had left him this morning. Poor man had spent an absolute small fortune on taxis going from Mountain View to Bethan’s nursery and on to San Francisco. B was pleased to see me. Steve assured me the insurance was fine. Good.
The hero doctor ambled in, still with bandana, and immediately was pleased to see B, who was starting to kick off out of boredom. Steve was drawing shapes on an etch-a-sketch style thing and Bethan was identifying them (she was 22 months). He said he thought she was very advanced. Flattery gets you everywhere. Then he got down to business and explained what was going to happen. He was going to sew a stitch in where the sun don’t shine to try and hold the baby in. Fortunately for me, I knew exactly what the operation would entail because I’d heard of it happening to others on the various forums I read. I knew it was the only way forward. I was very grateful for knowing this, because otherwise I might have wondered. It was all new to Steve.
Me and B swimming only the previous day.. not good!
At some point I probably told Steve it was a girl but goodness knows if I can remember when. It seemed so academic. We were told the odds were not great, but the odds were even worse if we did nothing. There was a very high risk of the membranes (waters) being ruptured, or an infection being introduced. I winced as I remembered how the night before we’d been swimming in the outdoor pool at our apartment – could something have got in then? Also that if the cause of this happening was down to infection and not just a failure to hold the baby in, nothing could be done. He could not promise a happy ending. Insert swearword here.
Time passed. I was not allowed to eat or drink, not that I could anyway. Finally, I was wheeled down to surgery. The anaesthetist told me that if he was going to have anyone save his baby, he would want this doctor. Other passing members of staff said the same. More people mentioned various deities when I said I’d turned up here by accident because I’d had a bad feeling. I was wheeled into the operating theatre. The doctor appeared, with a different colourful bandana on this time, one more suited to surgery. The anaesthetist continued trying to comfort and reassure me, and talked about the NHS (believe me, US doctors and nurses love talking about it) and the Bahamas where he was from.
The surgery took maybe 90 minutes I think. I had to have a spinal, because I had to be conscious for it. Occasionally I’d hear a sucking of teeth and a muttered curse. These are not things you want to hear when someone is prodding around with your extremely non-viable baby. I was shaking all over, partly fear, partly the drugs. Finally, he was finished. I was wheeled into recovery, whereupon the nurse in recovery failed to put morphine in me correctly as a line was blocked somewhere and when she did, she put in three times the dose she meant to. Fortunately, morphine being morphine, I didn’t care all that much! It had really started hurting beforehand though and there was an incredible sensation of pressure. I kept asking over and over if this was normal and they said it was. For the hundredth time I wondered if I’d done the right thing – I’d felt fine, after all, just a few hours earlier!
The hero doctor came out eventually, with a portable ultrasound machine in tow (size of a small house – redefines portable, but hey). He scans the baby. She’s fine, kicking away. He gives me a big grin and tells me it all went fine. He said it was even worse than he thought – I was dilated 1.5cm (not supposed to be dilated at all) and the baby had slid right down to the edge of what was left of my cervix, feet first. The waters were visible, he could see her. She had to be very gently pushed back with a balloon before the stitch could be inserted. He said I was 48 hours from delivery, if that. To think I could have had a later appointment the following week! He’d also found a lot of blood and wasn’t sure where it had come from – he said in his hundreds of times doing this procedure he’d never had that happen before. Oh, great. Still, he was honest. And I got to learn over the next few weeks that his version of “positive” is when he says he can’t see anything wrong. Then you know you will be okay.
I was taken up to the ward, and spent the night on morphine. Still, I had a room of my own. They kept giving me other drugs as well, anti-contraction drugs and so on. After a while they took the morphine away. I felt seriously sick, and was sure I was going to be ill. They gave me drugs to stop that too. I looked up what had happened to me on my phone and was utterly relieved to see my doctor listed on several research journals as an expert in the field of what he’d just done. Nobody had been telling porkies. He was the real deal. Then I read about the odds of the baby making it. That I didn’t like quite so much. I updated my livejournal. I told work I wasn’t coming back until I had the baby. Given most of them (except my bosses) didn’t even know I was pregnant, I bet that caused a few surprises.
Days went past. I was moved to another room. I didn’t stop bleeding for nearly a week which is unusual. I was on strict bedrest – only allowed to go to the bathroom and horizontal at all times. Permanently wired to a contraction monitor too. Towards the end they let me out for half an hour in a wheelchair. On the Monday they scanned me and the stitch was in place just fine, and the baby very happy. My cervix now measured 22mm or so. Short by most people’s standards, but nearly eight times the length it had been just a few days earlier. Doctors came in and told me that I should expect to have a micro-preemie if I was lucky enough to make 24 weeks, which they thought was possible, but required a lot of luck. For a while it even looked like I was stuck in the US until the birth. They told me to get the very best care back in the UK and preferably a place with a top level NICU.
Which left the car. Steve, who hadn’t driven for four years and last time he did he wrote the car off (not his fault!) now had to drive a rental car on the wrong side of the road out of a cramped car park (getting away without paying even though the car had been there a few days!) and through central San Francisco. Somehow, he did this without breaking anything! Steve and Bethan visited whenever they could, but as Steve had to work, I saw them for maybe a few hours each evening, then Steve had to drive the huge distance back to the apartment, getting back around midnight before getting up at 6am to rinse and repeat. The nurses were *wonderful* and took fantastic care of me – helped by the very low nurse to patient ratio. I had my own room with a view over San Francisco, and a room service menu for food. One nurse apologised for the borders up by the ceiling being a bit drab. The NHS this was not.
At the end of the week they let me go back to the apartment. I was not allowed to drive. I had a final scan, and they told me that if a scan in a week’s time was good, I’d be safe to fly home flat on my back and go back to the UK. Obviously the second part of our visit, more training in Seattle for Steve was not going to happen!
I was sad to miss out on Seattle – I was going to meet two friends I had not met before. One is the mother of a baby who was Bethan’s age that I had met through a due date forum, and the other is friends with some of my London friends. Whilst we were in Seattle I was planning on spending quite a bit of time with both, especially the one with the mutual London friends. She is a photographer and was also going to take some maternity photos. Here’s the weird bit – she’s also a photographer and nowadays she’s also an area co-ordinator for Now I Lay Me Down to Sleep which is a wonderful charity that takes treasured photos of babies that are born too soon or too sick. I just have this horrible feeling that if I hadn’t had that scan, I’d have needed her at a Seattle hospital if I’d somehow managed to hang on another week or so beyond what the doctor predicted.
Anyway, our insurers thoughtfully booked us all into First Class on a Virgin flight home with flat beds, costing $20,000. The hospital bills we later found out were $50K or so – think there might have been two of those. So I had my final scan, all was good, and the doctor told me I had a “GREAT CERVIX!” which I guess is something! I was given some progesterone injections to take weekly that Steve had to inject, and a prescription for nifedipine, which is used for blood pressure problems but also reduces contractions. So we flew home, and I had a private nee-naw from Heathrow to our front door.
Upon my return, I did spend a night up at Queen Elizabeth (my local ineffective hospital) when I had a load of contractions after the flight – turned out I’d contracted a UTI but thankfully antibiotics sorted that. However spending a night up there, despite miraculously getting a private room (thanks to the nice midwife I saw at the start) with a broken bed, I realised how important it was that I did not have my care there – too many bad memories from the delivery of my first for starters. I was further convinced when they told me they would make no interventions to save her, not even attempting to stop labour, before the magic 24 weeks of viability. In fact a newspaper article came out around the same time of a woman in that hospital who was just left to it at 20 weeks to deliver. What a contrast to my stay in the US hospital! Thankfully, not all UK hospitals have that policy, and similarly many US hospitals do.
To cut an extremely long story short, there was excessive bureaucracy (after all that had happened, it was almost impossible to find anyone who would take my condition seriously) until I managed to get myself seeing decent consultants at Kings College Hospital. I wasn’t home free right away – one of the midwives there was hopeless, incredibly dismissive and utterly useless with the computer, so I ended up registered as a Black African amongst other glaring errors. Appointments were screwed up and threatening letters sent to me over missing appointments I’d not even been told about, and they could not get other simple information right, despite having my old notes to show them. Fortunately the doctors, and most of the other midwives pretty much treated me very well once the initial hiccups were resolved.
I spent an incredibly lonely 4 months on strict (bathroom only) bedrest, then finally at the very end, modified bedrest alone on my own at home, confined to a wheelchair we hired. I made some good friends online who were also on bedrest for different reasons and due in December too, and a couple of friends visited once or twice and I went for “coffee” (decaf!) occasionally so it wasn’t all bad.
Time passed. I worried. Sometimes contractions picked up, sometimes they didn’t. I had a lot of time to dwell on what had happened and what might yet happen. Reaching 24 weeks was a huge milestone and nearly every doctor I saw was delighted and surprised I’d made it that far.
Differences of opinion over care (e.g. the UK’s “you can go for a wander round the block” version of bedrest versus the US “don’t spend more than a few minutes in the shower”) caused internal conflict and anxiety, and early on medical staff, in particular the first midwife I saw and some of the staff at my local hospital, were not always supportive or understanding which led to a lot of stress. More bad things happened not related to pregnancy, including the old family dog (then living with my older sister) dying. Then my old boss who I had been quite close to took his own life due to his own incredible and bizarre life dramas (they started around the time I got pregnant) not working out. Ironically he had told me 2008 was going to be fantastic after my dreadful 2007.
I felt utterly trapped. Even when I was allowed out for brief periods towards the end, it was in a wheelchair. I needed one anyway due to my SPD – a problem with my pelvis caused by pregnancy which left me in agony especially when standing or sleeping.. I barely slept due to the pain most nights. Not exactly catching up on sleep! People always imagine that if they were given X months off work to stay at home that they would find heaps of things to do.. well, maybe if I didn’t have a baby to worry about I might have done. But thinking about her filled every moment of every day and as a result my concentration was in pieces. I would sleep as much as I could (more like try to sleep due to the pain) and hang about online. No watching TV series or reading.. my concentration couldn’t handle it.
It was an intensely boring, yet horribly dramatic time. I ended up very isolated from everyone. And then B had her accident.. and it all kicked off!
