Baby misdiagnosed in utero

We tried to conceive for about three years. We had miscarriages and we tried IVF. Nothing worked. Then I met this great acupuncturist and we fell pregnant within three months.

I wanted to see an obstetrician early because I thought, I’m older, I’m 45, I want to go to somebody who can really help me deal with pregnancy. We saw her at eight weeks and everything looked fine. But she said there was a high chance of chromosomal abnormalities in babies conceived to older women.

So we did two tests, one was for spina bifida and one was a Harmony test. Harmony is not covered by the government, it’s a privately owned company. Harmony and all the subsequent tests cost us $2000 out of pocket. We did the blood test, mostly to eliminate any concerns but also because we wanted to know the sex of our baby earlier so we could prepare. That was at 10 weeks.

I believed from the start that Ella was fine.

I will never forget that day when I was in bed puking my guts out, I had the most dreadful morning sickness, and the phone rang and it was my doctor. She said the test came back negative for Down syndrome. I said that’s fine. Down syndrome never worried me. There are a lot of happy people with Down syndrome; who is to say what’s normal and what’s not? And then she said I have really bad news because it’s high risk for Trisomy 18.

I didn’t know much about what it was. She explained that the baby dies in the womb usually and you have a stillbirth or miscarriage. Then she was saying that even if Ella is born alive she will live a short period of time. She said we needed to do a diagnostic test as soon as possible, after first having an ultrasound. She said we might be able to see from the ultrasound that the baby might not have a jaw, that she’s heavily deformed, her vital organs are abnormal, clamped hands, rocker bottom feet, strawberry head; all the worst symptoms. This was the first time I’d heard of Trisomy 18. I was beside myself.

She said it was 99% chance of Trisomy 18.

We went next day for the tests and the ultrasound looked fine. We proceeded to do the CVS (chorionic villus sampling) test. It’s a bit painful, but I just wanted to prove them wrong. I can’t describe to you, but I felt it was wrong. The test was inconclusive and we had to wait two weeks for further testing. The obstetrician called me then and said it was confirmed, that there was absolutely no doubt that our baby had Trisomy 18. She said the test was 100% accurate.

We went to see her and straight away were given the option to terminate the pregnancy. We said, but the ultrasound was fine. And there were 101 reasons why the ultrasound would be fine; she’s too young, it’s too early to see abnormalities, Trisomy babies sometimes don’t display abnormalities, sometimes they only show at 16 weeks and so on.

We went home to talk.

The way we thought, Ella is a divine human being. We tried to have this pregnancy for so long, so there was no way we were going to terminate it. We would stay the course and leave it up to a higher power, maybe God, Allah, whatever.

I joined these Trisomy pages on Facebook and asked what the signs were. Edward syndrome is a really serious syndrome and markers should appear early. The majority of the time, babies measure lower. They are two weeks behind in development, and Ella was always two weeks ahead.

We were doing ultrasounds every two weeks with a great ultrasound technician and she was always searching for markers. I remember one time Ella had her hands clenched and Jacqueline was poking me with the ultrasound wand saying, “Come on, open your arm, open your arm.” And Ella did open her arm to show, “I’m ok!”

What was alarming was that the doctor could ignore all the ultrasound evidence based just on the Harmony test findings. She kept saying it was 100% accurate because I think that’s how it was sold to her.

Abortion offered at every appointment

“Can we stop talking about terminating and focus on the pregnancy?” we would ask.

I always thought that after 20 weeks you couldn’t do termination. But my obstetrician said, no, no. You can terminate pregnancy at 37 weeks in Victoria. She said, you will sign paperwork with lawyers, you will have an ultrasound, something will be injected into Ella, your baby, to stop her heart while you watch, then you go home and grieve for a couple of days and then you come back and deliver stillborn.

That was atrocious to me.

I’d never heard anything like that. I thought it wouldn’t be allowed especially if the ultrasound is showing that everything is going so fine. That hurt.

It’s very upsetting during pregnancy when you’re feeling your baby kicking and they’re talking about terminating.

People asked me why I didn’t change obstetricians. I was working full time and I’d missed so much work, I didn’t have time to look for another, and how did I know that another wouldn’t do the same, offering me terminations at every appointment? Although, while my doctor was on leave I saw her colleague doctor, she was lovely, and she said that she just had one woman at the age of 42 whose tests came back as Down syndrome and baby was born just fine. So there are stories happening all the time.

Eventually we went to see a geneticist at the Royal Women’s Hospital and he asked me, who does your ultrasounds? I told him, and he said, well if she can’t find any markers of Trisomy 18, your baby’s fine. I said, what do you mean? And he said he’d just come back from a seminar where they discussed that CVS isn’t accurate because they are testing the placenta. It’s a placenta biopsy. The placenta sometimes performs a miracle, it heals the baby. It takes away the abnormality on itself and saves the baby. He said there were many cases proving that CVS is not that reliable. And that was the advice he sent back to our doctor, that he believed the Trisomy 18 to be confined to the placenta.

I was told also that, if I was in the public sector, the doctors wouldn’t pressure me so much to terminate. The public sector has strong lawyers that can protect them. Basically, I couldn’t sue. But in the private sector, let’s say Ella was born with Trisomy 18 and I was finding it really hard to cope, then I could’ve taken the doctor to court and sued her for the fact that she didn’t tell me how hard it would be.

Ella was born c-section. I was told that I couldn’t carry her over 38 weeks.

I will never forget the moment when, my husband had been taken away and I was in theatre on the table and had been given the spine injection. I had this enormous panic attack. I thought, oh my god, I can’t lie anymore. I can’t tell myself that she’s fine. We will now know. That’s when I got scared. Scared that what I believed was wrong. The paediatrician told me he would be able to know straight away whether Ella has Trisomy 18 or not after examining her.

The happiest time was when he brings her to me and says, “Congratulations, you have a healthy baby girl. She definitely doesn’t have Trisomy 18!”

After Ella’s birth

I went to the six week postnatal appointment with my obstetrician and she sort of apologised to me. She said, I’m sorry, my job was to put you in the corner. I said, I thought your job was to look after me, to listen to my wishes, to support me through all decisions that I make. But she said no, her job was to put me in a corner. I went to the appointment with my sister-in-law because it was really awkward. She did deliver Ella and she did the c-section well, but I was still angry at her to a degree. I could see during that appointment that she felt bad.

Silly me. I thought I’d spent thousands to make sure that she looks after me, that I get the best care possible. I thought I was going to a private doctor because she would care more, she would listen to me and be more open-minded.

She said, you knew better. You were always positive.

She gave me all the antenatal visit paperwork and for every appointment I could see how she had discussed termination. She wrote down that I was very positive and that I wanted to continue the pregnancy, yet she offered abortion every time. She wanted to protect herself, I think, documenting my always being against abortion.

I paid $2000 to make myself feel miserable all through my pregnancy.

I wonder all the time about women who are not as strong or who don’t have as strong support as I did, or who got scared because doctors can be pervasive, and you always think you should believe the doctor, that they know more. How many babies were healthy but were terminated just based on a screening test or diagnostic test that was wrong?

After I did the interview with Chanel 7, there were many people contact me and said they had the same experience. No one shared that they had terminated but I think that they would be so hurt to know that the test could be wrong.

I was shocked to find that Australia doesn’t collect data on whether antenatal tests are accurate or not. As far as statistical records go, Ella has Trisomy 18. It’s up to each individual laboratory to collect information, and they do what’s in their best interests. It’s horrible, but it’s all about money.

And they’re targeting women aged 35+ because they know we’re desperate. They’re telling us that it’s very likely that we’ll have it because of our age and they pressure us to have all these tests.

If we just listened to those tests and the doctor, then all these great memories, this fulfilling life, this joy and love would not exist.

Skills

Posted on

February 14, 2018

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Nikki's Story

Nikki was 17 and hadn't been living in Australia for long when she discovered she was pregnant. She chose Nahla.

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