This is a continuation of a series of posts on my problematic pregnancy against a backdrop of recurrent miscarriage. Please share the journey with me. (Read Reborn Part 1 first)
When the Fetal Medicine Unit doctor called us in to his rooms, looking apprehensive and clutching test results in his hand, we knew something wasn’t right.
The results were from sophisticated blood tests which form the second component of the Nuchal Translucency Screening Tests. They’re correlated with the ultrasound results and background risks, such as age and obstetric history, to produce more accurate readings for significant birth defects.
Firstly, he pointed to the very low risk recorded for Down’s Syndrome (Trisomy 21) considering my age (1:1341), but it was clear that wasn’t the end of the story.
Running his finger down the adjacent column of results, he lowered his voice, saying “But you have a very significant risk - 1:16 - of carrying a baby with Trisomy 18 and also worrying is the 1:74 risk of Trisomy 13”. Neither my partner nor I knew what either of these lesser known syndromes entailed but it was obvious from the look on the doctor’s face that both were more grave than Down’s. Apparently I had a low reading of a 'maternal serum marker' labelled PAPP-A…whatever that meant. I felt like somebody had punched me in the stomach. Like I’d free-fallen from a great height.
He began talking about options. My concentration faded in and out. I could opt to have an amniocentesis there and then or I could wait a week and return for the test. Or, I could choose to do nothing and monitor the baby’s growth and development until 20 weeks. But after that point, termination wasn’t an option. Perhaps, he said, there might not be a problem with the baby at all – the tests results could be indicative of the underlying issues connected to my history of miscarriage which may have been affecting the development of the placenta. But this would place me at risk of late term miscarriage, premature birth & low birth weight.
I decided against having an amniocentesis on the spot without too much hesitation. There is a significant risk of miscarriage associated with this test, which involves extracting amniotic fluid from the sac for definitive genetic testing. The purpose of the test is to give the mother the necessary information to make a decision about an abortion where birth defects are suspected. And as I wrote to a friend later that night, “Today I chose to wait and live in hope. Couldn't bring myself to put the baby at risk. And I really don't know if I could choose to abort a baby I am now so bonded to at any rate – especially considering my history of miscarriage.”
The Survival Plan
So we made a plan with the FMU specialist to have another high-level diagnostic scan at 18 weeks. The hope was that the scan would discount the bad blood tests by showing a baby continuing to thrive. A still active baby viewed at 18 weeks with an examination of vital organs, facial features, skeletal structure, on target growth etc, indicating 'normal' development, would provide reasonable confidence that the baby had defied the risks with regular scans thereafter to track ongoing development. But if the scan results were poor, they'd recommend I have an amniocentesis. And if those results confirmed one of the suspected syndromes, I'd then have to make a decision about a late abortion.
When I got home I felt like I was in a bad dream but rather than curl up on the couch I began voraciously researching Trisomy 18 and 13 – knowledge is power to a journalist and research is a coping mechanism for me.
According to Dr Google, both of these chromosomal abnormalities manifest horrendously…much worse than Downs'. Characteristics include severe mental retardation and very serious defects involving the heart, kidneys and other organs along with additional physical symptoms. But worse, most babies with these conditions don't survive to term or are stillborn. And of those who survive birth, 50% and 80 % respectively die within 7-42 days, although a handful have lived up to the age of 10 with significant medical intervention.
Before I went to bed, I wrote to a friend “As I'm sure you can imagine, this is a pretty awful experience…I was so looking forward to being unreservedly, publicly joyful about this pregnancy. And now I have an agonising 6-week wait before I know more. And a building sense of premature grief as a large question-mark clouds the baby's future. Why, for once, couldn't things just be 'easy'? I realise that sounds self-centred and plenty of others are worse off…but don't I deserve a break from the universe…some genuine, unadulterated pleasure?”
“I really am trying to focus on the positive. And, from the 'happy thoughts' annals, a 1:16 chance of having a baby with one of these conditions – a rate 20 times higher than other women my age who already face elevated risk - is still a 15:16 chance that it won't be affected. And I'm holding onto the anecdotal wisdom that a baby on-target in terms of growth at 12 weeks, who appears very active on ultrasound, is a good indicator of one who'll ultimately thrive and arrive healthy… How could I not live in hope that this little human being is meant to survive and make a stellar contribution to human kind whatever her capacities?”
I eventually drifted into sleep, worried about the decision that lay ahead regarding the amniocentesis and praying for a healthy baby.
But I woke up to a nightmare.
Feeling feverish, crampy and wet, I touched my thighs and was alarmed to feel liquid. I sat bolt upright and threw the covers back to find sheets covered in blood. “No!!” I cried. “I’m bleeding!” My partner jolted awake and sat speechless on the bed while I angrily blinked back tears. “Not again!” I stuttered. It was 7am and we didn’t know what to do. There was no way I was going to a hospital emergency room after previous scarring experiences of mistreatment in the midst of miscarriage. Instead, I lay back down and, despite passing blood clots, I prayed the bleeding would stop. At 8.30am we got in the car and drove to the obstetrician’s, alerting the surgery before we arrived.
I sat in the waiting room surrounding by pregnant women with babies and small children in tow. It was a harrowing wait. I could no longer stem the tears but just hoped I could stop my quivering bottom lip from progressing to a state of full-blown, heaving sobbing. My obstetrician ushered me into her office next. She tried to prepare me for bad news on the ultrasound…I was oblivious – I just wanted to see my baby.
But I couldn’t look at the ultrasound screen until I heard her say, after a few moments’ hesitation, “She’s OK. There’s her heartbeat”. The baby was lethargic but her heartbeat was strong. We still didn’t know the baby’s gender but the obstetrician had concluded she was a girl “Girls are tougher, they’re survivors", she said.
While seeing my living baby was extraordinarily reassuring, I was now officially in the grip of another 'threatened miscarriage'. The obstetrician surmised that the cause of the bleeding could either be a very ill baby in the process of miscarrying or a poorly formed/functioning placenta which could also trigger miscarriage but may be 'survivable' if the bleeding stopped.
I narrowly escaped hospital admission on the condition I agree to three weeks' bed rest at home and to "avoid stress at all costs". But, if the situation deteriorated further, I was warned I’d inevitably wind up in hospital. Unfortunately there was nothing else I or the medicos could do at that point but 'wait & see'. An incredibly frustrating treatment plan. The hope was that the bleeding would abate and the baby would recover…but the chances were not brilliant. Nevertheless, I continued to hope – in the context of reality.
Admitting I Needed Support
As I wrote to a friend that night, my biggest underlying fear was grief: “I don't know if I can withstand more loss in the form of another miscarriage. Yes, I'm strong and resilient and I have survived much and thrived in the aftermath...but I'm only human. That said...deep down I seem to know I'll somehow find the strength to keep walking independently no matter what happens. But this is definitely one of those times where I have to concede I need help in the form of care & support from others.”
In the grip of this crisis, my partner withdrew emotionally and he wanted to keep the pregnancy quiet until the 18 week scan - assuming I didn’t miscarry the baby. These were very trying times. But I was already ‘showing’ and it would be beyond obvious that I was pregnant at 18 weeks. Besides, I really needed the outside support now that things had grown so difficult. So, I broadcast the news to an extended network of friends and family via email.
“Everyone keeps telling me how strong I am...strange...I feel weak, afraid & exposed. But I do seem to have relocated my funny bone, which is probably a good sign,” I wrote to a friend as I lay on my couch a few days later, so exhausted – emotionally and physically that I could do no more than watch Harry Potter DVDs.
On February 19th I wrote: “The bleeding has escalated again & it's just shattering :( Why isn't it stopping? Is the baby OK? It's awful to feel so out of control of your own body when another life is dependent upon it.”
We would have to wait until the following Monday – the next scheduled obstetrician’s visit - to discover whether or not the baby had survived the ordeal. [read more]
18 May, 2009
This is a continuation of a series of posts on my problematic pregnancy against a backdrop of recurrent miscarriage. Please share the journey with me. (Read Reborn Part 1 first)
Posted by J-scribe at 8:39 pm
The Bambina @ 12 weeks
She kicks me in the guts and I feel only love.
It’s been a long, painful journey to motherhood for me. At 38 and with a history of recurrent miscarriage I’d almost resigned myself to childlessness. But now I’m eagerly awaiting the delivery of my baby girl.
The Bambina, as I’ve called her since she was just the size of a peanut and her gender was indeterminate, is now 25 weeks old and will be a resident of my womb until August.
Last November, 15 months after my last miscarriage – a perfect little boy who died inexplicably at 11 weeks in utero – I went to see a fertility specialist to progress inquiries into the cause of my previous three miscarriages. I’d put it off as long as I could. I still wasn’t sure I could risk the pain of another pregnancy loss but the doctor was upfront: “It’s now or quite possibly never.” This was because of my partner’s low fertility due to cancer treatment and my ‘advanced maternal age’ in conjunction with my history of miscarriage. IVF would be required to get results quickly. First, though, I would undergo surgery in an effort to identify possible causes of miscarriage.
I left the specialist with my partner, feeling like I no longer had options – to choose to do nothing now would probably deny me a choice down the track. So, we agreed uneasily to ‘throw it up to God’.
In mid-December I underwent investigative surgery and, amidst extreme work-related stress, I began to prepare mentally for commencement of IVF in January. Part of that ‘preparation’ involved immersion in an alcoholic haze over Christmas. But the day after Boxing Day I awoke feeling queezy…breasts tender…period late. I joined the dots and the ‘piddle-stick’ confirmed the result: these symptoms weren’t just the product of stress and exhaustion, I was pregnant! Fear and excitement merged and stole my breath. I summoned my partner and we sat staring at that stick in disbelief. Then we laughed, acknowledging our earlier decision to ‘throw it up to God’.
My first instinct was to consult the medicos…I needed to know what the surgery had uncovered. I was 5 weeks pregnant and I lost my first baby at 6 weeks, the second at 8 weeks and the third at 11 weeks. But this was the period between Christmas and New Year and my fertility specialist, my obstetrician and my GP were all on holidays. Limbo.
Not content to sit back and wait, though, my partner tracked down a nurse at the fertility centre where we were tentatively enrolled and she bridged the gap. She contacted the holidaying specialist who confirmed that the surgery and associated tests had uncovered possible causes of my previous miscarriages. I had a high level of ‘Natural Killer’ cells in my uterus along with the presence of cardiolipin antibodies and phospholipid antibodies. Both of these factors have been linked in research to multiple miscarriages during the first trimester. It’s believed they inhibit the implantation and growth of the embryo and may cause an immune-system triggered rejection of the baby. It was a terrible thought to confront: my own body may have effectively killed my babies...
I was then was sent for blood tests which indicated hormone levels consistent with a normally progressing early pregnancy and I booked in for an ultrasound to establish the viability of the pregnancy. I felt physically ill in the lead-up to that ultrasound appointment – I was desperate to see my baby’s beating heart on that screen. These scans had ended in heartache in previous pregnancies on all but one occasion. A heartbeat was detected at 6 weeks during a threatened miscarriage with my last pregnancy, but at 12 weeks a follow-up ultrasound revealed my baby had died in the interim.
Scanning For Life
So, as I lay on the clinic bed this time around, with a stomach covered in ultrasound gel, I stared at the monitor, holding my breath. The radiographer was too quiet for my liking and my partner & I shared pained expressions as he squeezed my hand. But after what seemed like an interminable period, she said “Can you see that flashing light? That’s your baby’s heartbeat”. She brought up a graphic representation of the heartbeat and told us it was a very healthy 180 beats per minute. I wanted to cry with relief but apprehension about the ongoing risk of miscarriage, and having previously miscarried after seeing such a heartbeat despite a 95% chance the baby would progress to term, self-preservation instincts kicked in and I suppressed the excitement…I needed to be emotionally cautious. This proved a wise move. The radiologist who analysed the scans reported that the heart-rate was actually 118, not 180 and this was marginally below what’s considered ‘normal’. Nevertheless, he declared the pregnancy viable at six weeks.
I was then prescribed daily injections of a drug called Clexane (a blood thinner and immune system suppressor) to address the underlying problems identified in the IVF work-up, while I waited nervously to see a specialist at the conclusion of the holiday hiatus.
Face Down on the Bathroom Floor
But a few days after I began this treatment, feeling very ill, I hovered over a glass bowl on the edge of my bath. Moments later I was passed out, face down on the tiled bathroom floor…lying naked in a pile of shattered glass. As my panicked partner tried to rouse me, I felt myself fitting as I came to – tongue clenched between teeth and my leg kicking involuntarily. This was a very scary experience but all I could think was “Is the baby OK?” As my partner patched up the cuts that covered the left side of my body, I feared the worst.
I was instructed by the IVF nurse to go straight to Emergency at Canberra Hospital if I fainted or fitted again and to see my GP ASAP. Thankfully, my bathroom performance had no encore but I had to wait three more days before my GP’s surgery reopened. When I finally saw her, she did some routine tests and deduced that the episode was probably a virus or the product of a blood pressure spike. The baby would not have been affected.
I gradually began telling my closest relatives and friends about the pregnancy during this period, having decided I would need the support if anything did go wrong and wanting to celebrate the news quietly with them – it was important to validate the life of our baby in the hearts and minds of the people I love most. Also, as I wrote to a trusted friend at the time “Geez, I'm a journalist and I have a human being growing inside me - hard to embargo that kind of yarn!” There was an appropriate mixture of joy and apprehension from those I shared the news with and it was comforting to know they were variously thinking of us, praying for us and begging the universe to intervene on our behalf.
In mid-January, I finally got in to see my IVF specialist who confirmed previous test results and explained that I’d be on the daily injections until I was 14-20 weeks pregnant. Injected into my stomach, these needles were not the highlight of my day but I was grateful for any kind of medical intervention that might lead to a sustainable pregnancy. However, she gaped when I told her that I was pregnant at the time of the exploratory surgery. “No, you couldn’t have been!” she said, pushing her chair back from the desk. “You do the maths", I thought. “That’s the stuff of my worst nightmares”, she said “...operating on someone who is pregnant and possibly accidentally aborting the baby”.
Poor woman looked like she may fall off her chair. So, I said “Not to worry, ‘she’ has so far survived a surgeon’s invasion and a scary fitting episode after being conceived amidst extreme stress, with the assistance of that excellent relaxant called champagne. It’s OK”. And, as I wrote to a friend at the time, “...there's something encouragingly cheeky and determined (s/he clearly gets that from moi :) about a baby who pre-empts IVF...and survives a surgeon’s knife that bodes well for this pregnancy. So, I am taking a leaf out of Obama's book and having the audacity to hope.”
By the end of the month I’d seen my obstetrician who, while very excited for me after helping me through my last miscarriage, was keen to monitor the pregnancy very closely due to its high-risk nature. So, I saw her weekly from thereon in and eagerly but nervously looked forward to greeting my baby on the ultrasound screen at each visit. Although a consequence of a problematic pregnancy, this was a rare privilege. Seeing her heart beat and watching the incredible pace of her growth week-to-week cemented the bonding I’d subtly resisted out of fear. I fell in love with my baby during this period, conscious that if she was lost to me, devastation would be eclipsed.
I was referred to the specialist Foetal Medicine Unit (FMU) at Canberra hospital for assessment and a diagnostic scan at 12 weeks and we decided to go ‘public’ with the news after that appointment, based on the conventional wisdom that miscarriage risk declines significantly after that point. Gradually, I began to relax into the pregnancy and hope started to supplant fear.
So, in mid-February, in the grip of conflated excitement and anxiety, we visited the FMU for the long-awaited 12 week scan. The friendly but professional medico appreciated our anxiety and immediately reassured us that our baby was alive and kicking – quite literally! It was extraordinary to watch her body being mapped on 4D ultrasound. She no longer resembled a peanut or a jelly-bean – she now looked like a miniature human-being, albeit an oddly proportioned one. Arms, legs, fingers and toes, distinctive facial features and already in possession of some fairly impressive dance moves. The ultrasound operator acknowledged all of these observations as excellent signs, consistent with normal development, and confirmed this with a crucial measurement – the depth of the Nuchal Fold, a pocket of fluid located at the back of a foetus’ neck which indicates the likelihood of Down’s Syndrome. My age put me at significant risk of having a Down's baby but the radiographer declared: “that measurement is perfect”. The baby’s major organs also appeared to be developing “perfectly”, she said. I couldn’t wipe the wide smile off my face and I allowed my heart to leap unfettered for the first time during the pregnancy.
We left the ultrasound room to await our appointment with the FMU specialist, feeling confident and relieved. But bad news was lurking just around the corner [read more]
Posted by J-scribe at 3:11 pm