18 May, 2009

Reborn - Part 2

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.

Threatened Miscarriage

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.


Mrs. Mother said...

I am reading your blog with tears in my eyes because it brings back to many memories of last summer. I am also a journalist. We have problems with infertility, and it took us a long to get pregnant with our first daughter, and then again, with our second. She was diagnosed with Trisomy 18 through an amnio after a blood test at 16 weeks. I can remember doing all the research before we got the official diagnosis.

My story is a long one, but one of the other things that reminded me of what I went through was your reference to Harry Potter. If it hadn't been for those books, I don't think I would have been able to get through it.

I can't wait to read the rest of your story.

J-scribe said...

Thanks, Mrs Mother, for your moving comment.

It's amazing how much pain lurks beneath the surface of 'happy parenting' for so many women. But the burden is somehow lightened when we share it.

Part 3 will be up in the next few days...when I can muster the energy to post on this again.

TUC said...


I am following your story with knots in my stomach. I am an older mom with two children, two miscarriages, and then my little tie-breaker who has Down syndrome. Your story brings back the memories... and I so hope you get a peaceful ending.

Btw, I thought the rate for ds was 1/800 for those under 35. At 38 it is 1/177, for me it was 1/85. Anyway, ds is not the terrible things you read/hear... my daughter is beautiful and just as much of a joy to raise as my other kids.

Looking forward to part 3...

J-scribe said...

Thanks TUC...yes, those DS figures equate with the ones I've seen but my own personal risk for Down's was very low due to the combination of test results (the same ones that put me @ such high risk for Trisomy 13 &18!)

Your daughter sounds gorgeous...I would never have considered terminating a child with DS (just a personal perspective based on experience - but I totally respect the decisions of others on that count) but these other Trisomies are so devastating :(

I hope I get the chance to post part three at the weekend! Thanks for reading.

TUC said...

Yes, yes, 13 & 18 are heartbreaking. We spent many weeks in NICU and saw so much sorrow. I still suffer from PTSD for myself and other mothers. Some paths are very difficult to follow.

J-scribe said...

Comment received on this post via my Facebook link:

23:24 on 18 May
Oh Julie! *cries* I am waiting anxiously for part 3.

«design» enigma CREATIVE MEDIA                © Julie Posetti «2007»
[ *The opinions expressed by j-scribe reflect those of the author only and in no way represent the views of the University of Canberra ]