The day I found out I was pregnant with our second child was filled with mixed emotions. Mostly excitement; we are going to have another beautiful baby, Cameron will be a big brother, our family is expanding! Along with the excitement was nervousness, two kids is a scary thought, and am I going to get any sleep with a toddler and a newborn? I was also anxious, eagerly awaiting that “safe” 12 week mark. It really was a rollercoaster of emotions that I’m sure all mums know well.
He looked perfect on the screen
As time went on, I became more and more confident. Everything will be okay! I can do this! I found myself carrying around this beautiful little secret, a secret I wanted to shout from the rooftops. Finally I was 10 and a half weeks. We had started telling a few close friends and our families and it felt great. Everyone was over the moon.
My husband and I had decided at this point we would get the Non-invasive Prenatal Testing (NIPT) done. It has become quite popular since I was pregnant the first time because of its accuracy. It is more expensive, but I wanted it done to ease my paranoid mind. I went and had all the blood tests done, along with a quick scan of the baby. He looked perfect on the screen bouncing away in there. Cameron was also there to see his baby sibling for the first time. I eagerly awaited my results. Mainly so I could start telling the world because we couldn’t contain our excitement and my rapidly growing baby bump any longer.
“Not me, not my baby”
But my excitement soon turned to shock. I was in disbelief, when the test results came back with a high probability of trisomy 13 (also known as Patau syndrome), a rare genetic condition that affects the brain, heart, intestines and causes significant physical abnormalities. Most babies born with this condition will not survive the first week of life. Most pregnancies of babies with this condition will miscarriage. If not, many will not make it to full term and if they do, the baby will not live. Of course I googled it, which was a bad choice as the images of these babies just distressed me more. This has to be wrong. We were absolutely crushed. This can’t be happening. Not me, not my baby.
Holding onto hope
We were then referred to a genetic counsellor, he was a lovely man and he made this situation so much easier for us to bear. He explained to us that there is a 50 percent false positive rate on this test. But at the same time it is the most accurate test available. So we had hope, there was a chance everything would be okay.
I was booked in that same day to have the chorionic villus sampling (CVS) done to confirm the first test results. A CVS involves getting an extremely large needle to remove cells from the placenta for testing. This is done with the assistance of ultrasound so they can see where the needle is going. Not too painful, just uncomfortable. They did a lot of measurements on the baby. He was perfect, everything was spot on. Heartbeat fine, head size fine, two arms, two little legs, a nose bone, face structure, and he was moving around and kicking. Even the NT measurement was well within normal range. I looked at my baby on the screen and my heart was full of love. I loved him already. He is perfect. How could this be? I thought this may be the last time I see him and I just cried.
The most heartbreaking conversation
We then had the conversation about what will happen if the tests confirm the results from the NIPT test. I tried to hold it together the best I could. When thinking about the situation, termination certainly seemed like the best option, all other options sounded horrific to me. I needed to do what was best for me and for my family. The thought of carrying this poor baby to full term, giving birth only to watch him die terrified me. The thought of the amount of pain this poor child might have been in saddened me, I wouldn’t want to put my own child through that. I also had to think of my two-year-old and the kind of pressure and emotions this would put him through.
Four days later we received the call with our results. It was bad news. The CVS had confirmed that our baby did have t13. We were devastated by the news. All the hopes and dreams we had for our little boy were crushed. We would never be able to hold him or tell him how much we loved him. But we hoped he would know.
The decision to terminate
The very next day I was in the hospital, I was prepared for the surgery and wheeled away. I laid there alone waiting for the surgeon and I held my tummy and said my goodbyes with tears rolling down my face. One of the nurses had read my file and googled t13, she came back in and told me I was doing the right thing with a pat on my shoulder. I knew I was, but hearing it from a stranger really helped me at that point in time.
I woke up emotional, but feeling positive. My husband came in and I knew we would be okay. I couldn’t help but think about the last time I left this hospital, I had walked out with my precious newborn baby all wrapped up. But not this time. I cried again.
Sharing the news we never wanted to hear
The emotions that I went through I can’t even describe. The two weeks I had just been through seemed more like a year. And I was exhausted.
We then had the issue of telling the people we had shared our baby news with what had happened. The day we received the phone call I decided to send a group message to all our friends. I wanted our little man to be acknowledged, he meant something to us. I couldn’t have imagined the amount of love and support we would receive in my wildest dreams. My sadness almost turned to a feeling of celebration. Because I was open and honest with my family and friends, I was able to cherish and celebrate the life of my son and talk about him and what I had been through.
Keeping silent until the 12 week mark
Everyone is warned it is best to keep baby news to yourself until you reach the 12 week safety mark, but you need to do what feels right for you. I don’t regret telling my friends about our son early, even now. I honestly couldn’t have got through this without the love and support of my family and friends. Talking about our loss was therapeutic for me, the thought of just getting on with life and pretending it didn’t happen, felt unbearable. I had just carried a baby for 13 weeks and he died and that was incredibly hard to go through. I hope any women who is in a situation like this has the same support network I’ve had and can talk about it if that is what they want to do.
Before losing my son, I had never heard of this happening to anyone I know. Since sharing my story I’ve had many people come to me with similar stories and it hit me; people don’t feel they can share their grief, they need to keep it hidden because the first 12 weeks of a life aren’t really meant to be shared. Only grieved for in private. It kills me to think that people have gone through all of this and felt they had to keep it to themselves and not mourn the death of their baby. My baby will be cremated next Tuesday. I am thankful for the opportunity to say my final goodbyes and have closure. But mostly, I am thankful that I can share my grief with those who love me and the son we never got to meet.
If you’ve been affected by the loss of a baby, SANDS Australia offers support online or you can call their national, 24/7 phone line on 1300 072 637.