It all started on our 20 week scan which we thought would be just a routine scan.
We heard the heart beat again and again.
Some time passed, it felt like a lifetime but eventually the doctor stopped and started telling us what he could see.
‘Baby’ is in a weird position, I can confirm baby's stomach is on the right, all four chambers of the heart look good and healthy, it looks like the atrium is on the right. This is what I can see, I still can’t really see the veins clearly going into the heart. He started explaining it all to us, he drew a picture of a healthy heart and showed us maybe what was going on with our baby girl's heart.
She asked us to come back the next day and hopefully baby will be in a better position. We left the hospital.
We went back the next day, to see a paediatric cardiologist and we heard that beautiful heartbeat once again. He finished and the diagnoses started happening again.
He drew us a picture, he confirmed the stomach was on the right but that’s not what he was looking for, he confirmed the aorta was on the right but it should be on the left, he confirmed she had four veins going into the right or left side of her heart, she should have two in the right side and two going in the left side of the heart.
We finally got his written report, this report was really when we read the severity of what was going on.
We were reading words like Heterotaxy, pacemaker, arial septal defect (which we learnt meant hole in the atrium wall), right aorta, left IVC, ventricular inversion, the left ventricle was on the right and the right ventricle was on the left, the pulmonary artery was arising from the right ventricle and the aorta was arising from the right sided left ventricle, atrial malalignment, complex cardiac anatomy in keeping with heterotaxy arrangement. The baby would be born blue as the hole in the atrium wall was allowing oxygen rich blood to mix with deoxygenated blood, problems with heart rhythm which will require treatment with a pacemaker. It was recommended that we have a further review at 26 weeks.
Huh? What? Google tell me what we have!
Heterotaxy, 1 in 10,000. What? Why is this happening to us.
Long story short; Anastasia’s stomach is on the right, usually on the left, her heart is on the left but inside her heart was mirrored, so the left ventricle was on the right and the right ventricle was on the left. I’m assuming then that the left atrium was on the right and the right atrium was on the left. The aorta should be on the left but was on the right and was coming from the left ventricle which was on the right.
She had a 10% chance of biliary atresia, when the Dr told us that, stupid me said "10%, isn’t that a good thing, we have a 90% chance she doesn’t have it?"
No, 10% is bad, most babies have a 0.1% chance of this. This would most likely require a liver transplant, which would require a lifetime of medication so the body accepts this foreign body part or the body rejects it, and if the medication is stopped the body would most definitely reject the foreign liver, that’s if we could even find a liver to give to Anastasia in the first place.
It also means asplena, which means many spleens, many spleens means the spleen won’t be working. It's either no spleen or too many spleens, either one means the spleen isn’t working, so with no spleen her immune system wouldn’t have a fighting chance in hell to survive all this mayhem that’s about to happen to our baby girl from the minute she enters this world.
Baby isn’t compatible with life, this is another saying we heard a few times.
You think at five months pregnant you are pretty safe, I mean by that stage you are buying things for the nursery, clothes, you NEVER hear about termination for medical reasons, it’s just something people don’t talk about.
We had to make a decision, any pregnancy over 20 weeks is a registered birth which would be delivered naturally and also that would mean a registered death.
We were 23 weeks by this stage. We never thought in a million years that we would be faced with the decision to end our pregnancy.
Yes we ended our pregnancy, not because we didn’t want our baby, not because our baby wasn’t perfect, not because her diagnosis was an inconvenience to us, we ended our pregnancy because our much wanted and already extremely loved little Anastasia was given a diagnosis that resulted in a poor prognosis of life. This selfless act was to not let her suffer in pain.
We were told to come back at 5:00pm that day to start the procedure. We were in shock, we didn’t expect it to be happening so soon.
5:00pm on the 3rd March 2021, walking up to the birthing ward, walking past little cots and little pillows, all these things that are used for newborns and new parents. They put us in a room and we waited.
Eventually, a midwife came in and gave us some food and told us what was going to happen. They started to induce labour, this happened every 3 hours. By 3:00am, still nothing. I was in pain and vomiting, the cramping was almost unbearable, we thought things were starting to happen.
I hadn’t felt Anastasia kick for hours which told us she no longer had a heart beat.
At 5:00am the doctor came to tell us that it wasn’t working as quickly as they would like and that we would start with a drip that would induce the labour even more, by this stage the cramps were so bad so we finally asked for an epidural. The relief was almost instant.
4th March 2021 the doctor came in to break my waters.
By 7:08pm our beautiful Anastasia was in our arms, it was the happiest, saddest moment of our lives, weighing 485g, 28.5cms, she was so small, so precious but silent.
Instead of planning a first birthday we were planning a funeral, as quickly as we got to meet Anastasia, she was gone and it broke us, instead of leaving with a newborn baby we left with a box of a small little outfit that she wore for the night.
Thankfully, I was made aware of Gidget Foundation Australia through my workplace and Gidget Ambassador, Davina Smith. I was able to see an amazing Gidget Clinician who guided me through pregnancy after loss .
My husband and I were supported to navigate every step of our pregnancy after loss, Gidget Foundation Australia helped us get through the milestones that were a constant reminder of our previous loss.
Three months after Anastasia was born we were blessed to fall pregnant again.
Anastasia sent us a little sister.
Pregnancy after loss was the hardest, what are milestones for some, were a constant reminder of fear.
Sofia was born healthy 16/2/2022.