We got pregnant with our first child, Ruby, quickly and easily. Aside from high blood pressure and our tiny gymnast tying a knot in her cord, the pregnancy was predictable and controlled. She passed her pre natal tests with flying colours and was delivered by emergency c section at 38 weeks, 6 days.
At the time, I was so shell shocked from her sudden entrance into the world that I didn't think of what would have happened if we hadn't been in hospital. No matter how many times someone said to me how lucky we were to both be alive, it didn't really occur to me HOW lucky we were to have a healthy, happy, breathing baby at home with us.
When we fell pregnant a second time, it was by surprise. Definitely not an accident (we know it takes two to tango), but a bit earlier than we had expected.
The pregnancy went along wonderfully. Where I had been sick as a dog with Ruby, all I felt was mild nausea, sometimes getting a bit worse, but nothing compared to my previous experience. I had gained 8kg in the first trimester with Ruby, but when we went for our 13 week scan I had added a measly 2kg to the scales, something I was so proud of. I was barely showing, and kept remarking how strange it was for a second baby (all the while patting myself on the back for managing to keep what figure I had left after my first child). 13 week scan and blood test came back low risk for the common trisomy disorders (21, 13, 18) and we happily continued into the second trimester.
We booked our anatomy scan for 19 weeks, 1 day and invited our 8 year old niece to come along and find out the baby's gender with us. The sonographer started with all the normal things, checking that all baby's bits were there and working well. She asked me some (what I thought were) casual questions: "Have you felt baby kicking around lots in the last few days?". The truth was that I hadn't really felt baby move. I had been feeling a wriggle for the last week or so, but nothing strong or sudden like it had been with Ruby. I had just passed it up to the fact that every pregnancy is different and thought that this one would be a bit easier to handle than our hyperactive one year old sitting in the ultrasound room next to me.
She tried to get a good look at baby's heart and couldn't get the angle right, but didn't seem too worried. My husband took our daughter out to the car to wait as she was getting cranky, so it was just me and Penny with the sonographer when she said that there was something going on in baby's brain that she wasn't sure about, and that she wanted to get a better look at the heart. Could we come back at 4pm for another scan when a radiographer would be available?
5 hours to wait. 5 hours walking around in circles in town (we live out of town so it wasn't an option to go home and come back). We had some lunch, bought a new pair of shorts for our daughter, some sandals for her for summer. Tried not to worry. Tried to tell each other that it was just the way the baby was lying, that everything would be ok.
My mother in law picked the girls up after work, and Brock and I went with my mother to have a coffee and then head to the scan. It took about 5 minutes of the sonographer looking at the scan before she called in the radiographer.
They muttered at the screen for a while, spent ages looking at the heart and the blood flow, checking the fingers, legs, brain, kidneys. Tears started leaking out of my eyes the longer they looked, I could hear my husband and mother sniffing behind me too.
Then they turned the lights on, brought in a box of tissues and dropped the bombshell: It looks like it's chromosomal. My mum the doctor asked the question we were all thinking "Is it compatible with life?". No. The kidneys aren't functional, there is an overriding aorta, there is no way this baby could live. Suspected full trisomy 9. I didn't even know trisomy 9 was a thing.
Brock and I were in shock. The baby we had been expecting was never going to arrive. He is 26, I'm 28. Chromosomal anomalies didn't happen to people like us. They happen to other people.
I had an appointment with amniocentesis at the hospital in the morning with a specialist. Our midwife would meet us there. We went and collected our daughter from my mother in law and then I spent the night awake and wondering, googling the survival rates and prognosis for children with similar conditions.
We headed to the hospital early in the morning, sat anxiously waiting to see the doctor and were ushered into a small room in the antenatal ward. The facts were laid out for us. They were surprised I hadn't miscarried already. I wouldn't make it to term.
The doctor talked about the process we would have to go through. Take a tablet that would withdraw the support from the pregnancy, then be induced for labour two days later. The thought was horrible. Part of me couldn't help but think that it was all a mistake and we actually had a healthy, happy baby in there. But then they did the amniocentesis, to check for any other abnormalities, and I only had 1 cm of fluid. The scan appeared to have been perfectly timed to catch me right before I miscarried. The baby's heart was still beating, but the fluid had decreased rapidly from the day prior. They were unable to get any fluid to send off for testing.
The rest of the day was a flurry of doctors coming in and going out, a social worker, our midwife. All of them talking about this wee person as something to tick off a checklist. I could still feel movement. This was literally my worst nightmare.
I took the medication and felt like it should have been a special moment with my husband and our baby. Alas, it was with a doctor and a midwife as well. I didn't even get the chance to have a chat to Wee One before I took it. Part of me wanted to wait until I miscarried naturally, but I knew that it wasn't a safe option for us. With our daughter, my husband working and living out of town, letting nature take its course was something we couldn't risk when we knew the outcome was inevitable.
We were sent home and told to come back Friday morning for the second part of the process.
The two days at home were a muddle of tears and silence. My husband, stoic and steady by nature, was such a rock for me. One minute I would be doing something and the next I would be in a puddle of tears. He talked with me about it. Helped me reconcile that it was something we couldn't control. But it was so profoundly unfair I just wanted to crawl out of my skin.
I struggled with Ruby. I struggled with the family that were around. Everyone looked at me like I should be crying and screaming, but I didn't want to do that with everyone around. I wanted the luxury of being able to do it on my own time, in my own way.
Friday morning I cried the whole way into hospital. As if to stretch out the horror of the situation, it took them seven times to get a lure into my hand for medication. Then they gave me the tablets to induce labour and left me to it. Brock and I had a cuddle and a sleep (as much as we could) and then I started cramping after about an hour and a half. We moved into delivery (thank goodness a room without newborn posters or information in it, although it was patently unfair that it was on the delivery ward), and things progressed rapidly from there.
I will go into the details of the delivery a bit later if I feel I can, but right now all that matters is that I delivered a beautiful, tiny, wonderful baby boy at 2.36pm on 3rd October 2014. We named him William.
The official list of things wrong, according to the scan were:
Abnormality in the posterior fossa of the brain, probably cerebellar vermain agenesis.
The lateral ventricles are mildly dilated.
No cavum septum pellucidum visualised, raising the possibility of additional agenesis of the corpus callosum.
Both fetal kidneys markedly abnormal. They are large and markedly echogenis with loss of the normal parenchymal pattern.
Fetal heart abnormal, although difficult to define. Possible overriding of the aorta.
The position of the fingers is abnormal with probable syndactyly between some of the digits.
Nuchal fold is thickened.
Femora are short, more than 2 weeks behind established dates.
Bilateral feet abnormalities consistent with bilateral talipes.
When we saw the report, both of us were terrified that he would be horrible to look at. I didn't want to see him. I did want to see him. I'm glad I did. He just looked like a beautiful little boy. He was tiny, only 300 grams, but he had his big sister's nose. He was our baby and it broke my heart that he wouldn't be part of our family.
I know that this experience will change us. I know that it has happened for a reason and our overwhelming grief won't be forever at the forefront of our minds. It hasn't even been a week. Some days I can't breathe I feel so sad. Sometimes I can convince myself that it was for the best, that he wasn't a healthy baby and it was a kindness. All the time I am angry that it happened to us.
I plan on using this blog as an outlet for this process. I don't know if anyone will read it. If they do, I ask that if comments are made, please be kind. This was a situation that is every parent's worst nightmare, and every person deals with events in a different way.
I'm hoping that this blog will help me on this journey.
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