'I made the choice no pregnant woman should have to face'
I had never heard of Trisomy 21 until I got the results of my Nuchal Translucency scan back. My doctor, a quiet man originally from Myanmar, called me 'Dear' and patted me on the shoulder. Somehow that didn't make me feel better. Sympathy from doctors rarely bodes well.
The test results came back at 1:4 chance of Trisomy 21, better known as Down Syndrome. I didn't understand how bad that was until my straight talking Gynaeocologist had a similar reaction and referred me on for an amniocentesis.
I had chosen not to have the Non-Invasive Prenatal Testing (NIPT) because it was going to cost $500 and my husband and I already have a healthy ten-month-old son. It was in the month before Christmas and I could think of a hundred other things I needed to do with $500 so I skipped it. I deeply regret that now as the NIPT returns a 97% accurate result and it does so before you reach the point of gestation where a D&C (Dilation and Curette) is no longer possible.
In order to have an amniocentesis, you have to wait until you are 16 weeks pregnant. And then you have to wait another couple of days for results, and then another couple of weeks (in my case as my sample was contaminated with maternal blood) for a 100% accurate result.
This is a lot of waiting; waiting that keeps you awake at night wondering if the baby growing inside you has an extra pair of chromosomes that could lead to major health problems and guaranteed intellectual impairment.
It's during these long, anxious nights that the temptation is to turn to the internet for information.
Don't do this.
The internet is overrun with stories of how children with Down Syndrome are a gift from God. Stories about why diagnostic testing is evil. Stories that will make you feel much, much worse if you plan to terminate the pregnancy.
My husband and I already have three children - two from his previous relationship and our son. We struggle financially. We struggle emotionally with the challenges that a blended family presents. We struggle with just being married sometimes. None of this is unusual but our little family is still in a fragile stage and having another baby was going to push us to our limits.
When I found out I was pregnant again - albeit accidentally - it was with both joy and apprehension that we considered what this meant. We also talked about what we would do if there was anything wrong with the baby. I am 38 and the risks are very real.
We both agreed that we would terminate the pregnancy if anything came up. Simple as that.
As it turns out, not so simple.
It is the most agonising decision when you are actually faced with it. We really wanted this baby. We had spent months choosing names, looking at bigger cars to fit all of our kids, sharing our news with family and friends, and making plans with our employers for the impending maternity leave.
Terminating a Down Syndrome pregnancy is a uniquely terrible situation to be in. Unlike cases of miscarriage, stillbirth and other genetic abnormalities that result in foetal or immediate death upon birth, babies with Down Syndrome can go on to live happy, healthy lives. The conundrum is that you can't possibly know how badly affected your child is until it's born.
The reality, not so openly discussed in the parenting forums, is that babies born with Down Syndrome can have a range of severe health problems that will land them in ICU for the first part of their life, and in full-time nursing care for the rest of their life. There's no way of knowing if your child will be one of the worst or best case scenarios.
After weeks of gut-wrenching worry, we decided to stick to our original decision.
We were referred to the Early Pregnancy Assessment Service (EPAS) at Campbelltown Hospital. We made an appointment where a doctor and a nurse counselled us, asked us about our decision and partially explained the process of induction. We signed some papers and were told to call the Birth Clinic in three days' time to try and get in.
When we finally did get in - on a quiet Sunday morning - I didn't fully understand how long the induction would take. I had packed some pyjamas and a toothbrush on the off-chance but we thought we would be out of there by evening.
That's not what happened.
The induction - a procedure that involves placing a pessary of a drug called Cervagen up against your cervix - can take up to two days to work. My induction started at 10am and I was given fresh doses of the drug every three hours. Nothing much happened except for a few cramps and back pain until about midnight when the contractions really started to ramp up. The nurse gave me an injection of morphine and at 2.15am, I got up to go to the toilet because I felt like I needed to do a poo (I was too embarrassed to call the midwife about that).
That's when my waters broke and my baby came out into the pan that the midwives had placed on the toilet.
My husband called the midwives and they came and cut the cord.
That's when I saw him for the first time. Little Max.
He was tiny - about the size of a very small kitten - but perfect in every way except for his wide-spaced eyes and low ears. He wasn't alive when he was born.
The midwives and social workers give you options about what you would like to do once the baby is born. Do you want the baby in the room with you or do you want them to take him away?
I was scared about this. I didn't know if I wanted to see him because I wasn't sure what to expect at 18 weeks gestation. As it turned out, I couldn't avoid seeing him and, once he'd arrived, it felt perfectly normal to have him with us. He was our baby.
We spent some very tearful, heartbroken time with him and then I was taken into theatre to have the placenta removed under general anaesthetic because it didn't deliver naturally.
When I came back, my husband and I were asked what we wanted to do with the body. The options were: have him taken away, have him cremated at Forest Lawn in a group cremation with other deceased babies where the ashes would be placed on a memorial garden, or make our own arrangements (under 20 weeks, the baby is not considered viable and therefore doesn't need a legal funeral).
We chose to make our own arrangements and his body is with the local funeral directors who will cremate him and return the ashes to us.
So why am I telling you all of this?
Because no-one told me.
No-one told me anything. I didn't understand that an induction could take two days. I didn't understand that over 16 weeks gestation I would have to deliver the baby. I didn't realise how people would react when we told them what had happened. Even women who had lost babies took a distancing step; they lost their babies whereas I was terminating mine. It's an important distinction to most people.
It is a very hard and lonely position to be in and, if you are in this position, I want you to feel less alone.
And now? Now that we're home and my body is returning to normal, and the only reminder of Max is the hospital blanket, blue teddy bear and birth book a midwife gave us with his foot and handprints, and measurements?
My heart is still completely broken but I know that we made the hardest, worst, right choice.
This originally appeared on Kidspot and has been republished with permission.