I feel like I have told her story so many times now, to family, to friends, to doctors, social workers, specialists and my psychologist, to myself, and to her, that when I tell it now, there’s no heart left in it. I feel like I can no longer tell it in a way that shows just how earth shattering, how life changing, and how utterly tragic it is. I feel like there’s no fight left in me to explain, to justify, to reason, to demonstrate, without doubt, that we loved her beyond imagination. That everything, all it of, the heart ache, the pain, the self doubt, guilt and hate was all for her. I don’t have the words anymore to tell you how much I miss her, how there is a part of me that is broken and empty and always hers.
But I will try. This is her story:
The Angel Princess was our honeymoon baby. Just over a month after our wedding, after trying for months and an early miscarriage, we got our positive test. And we were thrilled. We had just bought a brand new car, and were so excited, our lives, and our family were coming together. The Sunshine Princess was 21 months, she’d be just short of 2.5 when the baby arrived. It was a bigger space than I’d wanted, we had started trying again when she was 5 months old, hoping for siblings close in age. But it didn’t matter, because I was finally pregnant, and we were overjoyed.
It’s sounds cliche to say that I knew from the start that things weren’t right, but I did have a strange feeling that I couldn’t shake that something was amiss. I put my paranoia down to the previous miscarriage, and looked forward to passing the 12 week mark. Because then I would be safe. At 6 weeks I had a dating scan, the dates were off what I had calculated, but the same thing had happened with The Sunshine Princess, so I wasn’t too concerned. At my follow up GP appt, the doctor, one who I wasn’t very happy with, casually informed me that the scan had shown I had a subchorionic haematoma, and that I should go home and expect to miscarry. I left devastated and rebooked another scan. I checked my underpants for blood every hour for the next week, and waited, sadly, for the cramps to start. The scan was an agonisingly long week later, but the technician was kind, showed me everything was progressing well and assured me that those kinds of bleeds were completely normal and rarely anything to worry about.
At my 12 week scan I felt concerned that the scan had taken too long, I noticed that the technician had had trouble getting the nuchal measurement, and when my results came in, though my statistic was good in terms of the possibility of the baby having T21, it was vastly different to the result I’d had with The Sunshine Princess, and it left me feeling uneasy.
It took the whole first half of the pregnancy to organise who would be my pregnancy care taker. There are two local hospitals near me, and I was adamant that I did not want to return to the one where The Sunshine had been born, her birth was traumatic, and my miscarriage had also been managed there, very poorly. The other hospital was closer to me, but refused to allow me to birth there, as they are not equipped for risky births, and because The Sunshine Princess had gone to the Special Care Nursery after her birth I was classed as high risk. Unsure what to do, and worried for my birthing choices I had started looking for a doula to be an extra support person. One doula I spoke to suggested that I ring the birthing centre at a hospital that was a 45 minute drive from home. I did, and although I was out of area, upon hearing my previous birth and miscarriage stories, and birth wishes for this pregnancy, I was accepted into their care immediately. I decided that because I would be receiving one to one midwifery care I wouldn’t need a doula, and my first choice was unavailable anyway. I was so relieved to know that the rest of my pregnancy would run smoothly, and I would be in the best place to give birth how I hoped.
At 19 weeks and 5 days we had our morphology scan. We had known even before the pregnancy that we would find out the sex of the baby, we’d waited until birth with The Sunshine, and wanted to experience finding out earlier. We were told we the baby was a girl. We joked about how with 3 ladies in the family we should Paint The House Pink. Although we were more than happy to find out we were having a second girl, we both regretted finding out, it was such an anti climax compared to the anticipation and thrill of discovering the sex at birth. During our scan, the technician told us that our bub was laying awkwardly and he was having trouble getting pictures of her hand. He never mentioned it was of any concern, but not long after we had left we received a missed call and voice message from the secretary of the ultrasound place telling us that we needed to make an appointment to see our doctor as soon as we could, so he could discuss the results of the scan.
I am so frustrated with this part of the story, as things should have moved more quickly and smoothly than they did, not that the outcome could have been changed, but we were left anxiously waiting and wondering for longer than we should have been. I rang my GP surgery, I had just missed my doctor, who had left on an overseas holiday, but he had said it would be fine for me to see another doctor, and the earliest appointment was a week away, but I shouldn’t worry. I was concerned and upset, and frustrated at the proposed wait. I rang the radiologist and asked to speak to someone there who could give me more answers on my scan results, immediately, over the phone. The receptionist was kind and understanding, and had their head of ultrasound ring me back. He explained that not being able to see the baby’s hand was a concern, however 9 times of out 10 it turned out to be nothing more than an awkward position and that they just wanted the GP to refer me to a follow up scan. I felt reassured, but still nervously waited for my GP appointment.
In that week I had my first appointment with my new midwife. I told her about the concern over my scan results, and she had them faxed through. Those notes said that everything with baby appeared within normal range, except that one hand had a clenched fist with splayed fingers. The midwife reassured me that bub was probably just being cheeky, and we decided to see what the GP said at the appointment. The GP also had my scan results, but told me he had very little experience in the field to be able to give much clarity on what they meant. He rang the head of ultrasound at the Children’s Hospital, read him the results, and told me the recommendation was that I have a follow up scan, at a different radiologist. The GP wrote me a referral and gave me a copy of my notes.
When I tried to make the appointment at the new radiologist, I was knocked back, as apparently the referral needed to come directly from my pregnancy care taker, the midwife. I rang my midwife, but as she couldn’t write referrals to other radiologists, we decided it would be easiest if I just had the scan at the hospital the birthing centre was in, she could come with me, the head obstetrician would check the results and everything would be fine. She would ring me back with an appointment time, hopefully for the following day. Later that day when she called me back, she told me that she had given my notes to the ultrasound team, and to the obstetrician, and it had been decided that I should be sent straight to the major obstetric hospital they are attached to, to the Fetal and Maternal Medicine Unit for a specialist scan. My midwife assured me that it was just so we could get the most accurate results, on better equipment, as soon as possible, instead of having me worry any further. Ironically it was this phone call that cemented for me that something really was wrong. Doctors were reading my scan results and worrying, healthy babies weren’t sent to the FMU. I was scared. And I think I already knew I would never bring my baby home.
The Husband and I had consulted Dr Google on what a clenched fist could mean for a baby. We discovered that it was a soft marker for a condition known as Trisomy 18, which is most commonly fatal during pregnancy. Most of the babies don’t survive to full term, of the ones that do 50% are stillborn, and of those surviving, half survive the first week, and less than 10% make it to their first birthday, and only do so with huge medical assistance to their vast and varied complications. The most common outcome for a prenatal Trisomy 18 diagnosis is abortion, where the fetus is induced at whatever gestation the diagnosis has been made, and is usually delivered stillborn. Rarely, the baby survives the induction and labour, and lives for a few minutes without medication or intervention, and then passes. We knew that if our daughter was given a T18 diagnosis, we would be offered a medical termination, also know as an IFFA (Induction For Fetal Abnormality). We also knew that most parents in that situation take that option.
The day after my midwife told me she would make an appointment at the Fetal Maternal Unit, and while we were still waiting for that appointment to be scheduled, I received a phone call from another Doctor, at another hospital. It was the head doctor of another Fetal Maternal Unit and he had been sent the my original morphology scan without my knowledge. He asked me if I had booked in for a follow up scan and I explained that I was waiting on an appointment time. He asked me which hospital it was with, and was satisfied that it was with a major obstetric unit. He told me that he would ring them to find out when my appointment was, and that if he could get me an appointment sooner, I should take it, even though his hospital was further away. I asked him if he thought my baby had T18 and after a long pause, he said he suspected it might be the case. I asked him how long I had, and he told me I needed the scans yesterday. I was running out of time to get a diagnosis before my baby died. If she was T18, she was probably on borrowed time.
At that point, that was my biggest fear. I had it set in my mind that I needed to induce my baby, rather than letting her die inside of me without my knowing when or why. If the outcome was going to be the same anyway, I at least wanted some control over when and how she died. I wanted to be able to prepare for her, so that I could give her all the love and devotion I could.
Later that afternoon my appointment was set, although it was an emergency appointment it was still a week away. The other hospital could not get me in any sooner either, so we were left to wait.
While we waited for the appointment
we started having long conversations and making decisions about what we would do in different situations. Based on a terminal diagnosis we both felt it would be best to interrupt the pregnancy. I knew that emotionally I could not cope with carrying a baby that was going to die before or at birth. I couldn’t imagine waking up every day and feeling my belly, waiting for movement, wondering if the baby had died over night. I didn’t know how I would handle all the well meaning pregnancy comments that would come my way, people asking when I was due, or if I was expecting a boy or girl, and the congratulations I would receive, knowing that my baby would never come home.
We spoke all night every night for the entire week, we cried and were utterly terrified, we tried to be hopeful, but we also discussed every outcome that we could imagine. We discussed what determined quality of life for us, what degree of disability our child might have, and how we might manage. We spoke about all the things that are only real in nightmares. We researched how terminations were conducted so far along in a pregnancy, we researched what procedures are used to keep T18 babies alive. We were in a dark world that we never wanted to be a part of, but we were not uninformed. We were prepared to hear the worst, we desperately hoped for the best, and we were completely naive of just how bad the worse could really be.
On the morning of our appointment my midwife was running late to meet us, but called to reassure everything would be fine. It was far from it.
We spoke to the doctor before she started the scan, and she informed us that she would indeed be looking for more markers of T18. The cold jelly was squirted on my bump and she began. There was no immediate reassurances that everything was in fact fine, and many many long pauses on particular areas of the baby, especially her arms and hands, the doctor was solemn and visibly worried. Our midwife arrived half way through, and I told her that the baby wasn’t waving. She held my hand and sat with us waiting. The doctor put down the ultrasound wand and carefully said to us “it’s not trisomy 18, but I would like to get another doctor to have a look”. There was no relief that our baby didn’t have T18, because it was obvious that something was still wrong.
After the second doctor had spent another eternity scanning our baby, they announced to us that they weren’t sure what our exact diagnosis was, but that our baby had a long list of physical abnormalities that appeared to be caused by a genetic disorder, but they hadn’t seen it before and would need to call their geneticist. They offered me an amniocentesis, which they explained probably wouldn’t help give a diagnosis but would rule some out. We agreed and it was performed less than 10 minutes later, with The Husband covering my face with his, so I couldn’t see the needle getting inserted into my belly.
We were ushered into a small office, and a social worker was sent in to be with us. The doctor returned after being on the phone to the geneticist, gave us a list of names of possible disorders that nearly fit our baby, but also told us that many of them had typical features that did not present in our baby, and our baby had features that did not match their guesses. The geneticist would be in that afternoon to further to discuss the results with us. We were advised that while we wait for him, we should start to think about what choices we would feel comfortable making about our pregnancy.
The words “termination” or “abortion” were never spoken to us, but we also knew that the suggestion to think about choices was the euphemism for it. We asked if we could be left alone to go for a walk while we waited for the geneticist, outside on a park bench we trolled the internet for information on the disorders they thought our baby might have. Nearly all of them were fatal before birth. Babies with these disorders rarely survived, they needed significant medical intervention at birth and throughout their lives, they had limited and shortened life expectancy and were almost always mentally disabled as well as physically. The hardest decision of our life, was cruelly, one of the easiest. We did not want this life for our child. We did not want her to face the pain and frightening interventions her life would require. We did not want to leave her to die on a hospital table, with tubes and wires and bright lights and worry. We wanted to be kind and fair, and let her go peacefully, without knowing fear or pain. Unless the geneticist came in and told us it was all a big mistake, and actually our baby had a simple physical disability that with a little bit of surgery and rehab would be easily fixed, we knew that we were going to become parents who said goodbye before hello.