Induction/L&DStoriesTrisomy 13 (Patau syndrome)

The “least shitty” option

We had to make a choice between rock and hard place, shitty or shittier. The least shitty option for us was to terminate the pregnancy.

By Jane

After several miscarriages, two living children, then more miscarriages, my husband put his foot down and said, “No more.” We couldn’t keep going on like that. I reluctantly agreed. Once that decision was made, I made peace with having our little family despite always wanting four children.

In Jan 2018, I had a funny feeling I was pregnant despite not missing a pill. I couldn’t shake the feeling so stopped drinking alcohol and waited until I could take a pregnancy test. It was positive. I sat on the bathroom floor repeating Oh, shit. I wasn’t going to tell my husband until after work, but somehow he already knew.

That evening, he told me he’d prefer that I abort our unborn child. I was 41, and the girls were growing up. Life was starting to get easier. We’d already agreed to no more pregnancies. But despite all of that, he promised he’d go along with whatever I decided. I went as far as Googling abortions and broke down. I was pro-choice but never thought I’d need an abortion. I couldn’t give my baby up or abort what I assumed was a healthy baby.

I checked my due date. It was exactly the same as both my living children. There was no doubt in my mind this baby would also arrive two days early, just as our daughters had. I felt it was a sign that this baby was meant to be. I spent the next few weeks terrified of another miscarriage.

We thought we’d made it to the safe zone

By 12 weeks, we were both happy that our family was growing. Despite the initial shock, we’d made it this far and were hopeful our baby would be okay. To reduce the chances of another miscarriage, we declined the amnio. At the 12-week scan, all looked good. That evening we showed our parents and children the scan picture.

Once we’d made it to 16 weeks (my personal “safe” zone), we began to tell people and organise things. I work at a holiday park which left me no time to arrange anything during the summer season. We had to get ready. We were given many baby items and bought a few more, so we were fairly organised by our 20-week scan. Not for one minute did we expect a problem.

This scan took ages. The sonographer kept going back to the baby’s heart. My concerns grew. She eventually said our baby had a cleft lip. I was like Phew, I hope that’s all. No, there were also problems with the heart: Suspected Hypoplastic Left Heart Syndrome (HLHS). An appointment was scheduled for the following day with a specialist in the main hospital 90 minutes from home. It was the same place where I was planning to give birth.

We were stunned as we drove back to our jobs. My husband felt it was his fault for not wanting this child initially. I was numb. No tears. I had to stay composed while picking the girls up from school and until they were in bed. I needed to research this before I lost it completely.

Later, I collected the girls for a promised playdate at our house with a couple of kids whose mum I really liked. We were becoming friends. I managed to tell her about the scan and the problems calling for an additional scan. She has since become one of my most trusted and closest friends. She has been there through thick and thin for me, even collecting my kids from school in the dark days when I just couldn’t.

I researched HLHS. At a minimum, it requires several surgeries beginning at birth, and possibly a heart transplant. But I believed our baby had a chance even though life would be very different and filled with hospitalizations. I was incredibly upset but termination still didn’t cross my mind. We went to bed and I broke down. Neither of us slept much that night or for a long time afterward.

The waiting was torture

The next day we arrived an hour ahead of our appointment time in hopes of being seen early. Unfortunately, they were running late. The waiting was torture. We weren’t seen until 5:00 pm. The MFM apologized many times for the wait. I was desperate for a wee and she told me to just have one; at this stage of pregnancy, she didn’t think it would be a problem.

After a long time in the scan room, the consultant said he saw many issues with our baby. The cleft lip and (probably) pallet were the least of the worries. He saw HLHS and brain abnormalities, which made him suspect Trisomy 18 (Edwards Syndrome). He told us he had more than 40 years of experience and in his educated opinion it was Trisomy 18 or a similar chromosomal abnormality. We had never heard of Edwards Syndrome. Once he explained it, we were beyond heartbroken. He said we needed an amnio to confirm the diagnosis.

The consultant and MFM couldn’t have been nicer. They didn’t rush us despite it being well after their time to go home. They even offered us tea (we declined) before the journey home.

We got to the carpark and fell into each other’s arms. We were good people who help others. My husband is a pharmacist; he spends his life helping others. What had we done to deserve this? The journey home was a complete blur.

I had the amnio two days later. Signing for it hurt, especially when the doctor explained the chances of miscarriage. The procedure itself wasn’t physically as bad as I thought. There was no pain, just the poke of the needle.

I was so mixed up. If it was Trisomy 18, I hoped for a miscarriage. If it wasn’t, I didn’t want to lose the baby. I felt awful wishing for a miscarriage. I hoped for a miracle.

After some test delays and another long wait, Sue, the lovely MFM, phone me with the results. “Are you sitting down?” she asked.

“Yes.”

“Is there anyone with you?”

“No.”

“It’s not Trisomy 18.”

My relief was too brief

“It’s Trisomy13,” she said. “A similar diagnosis.” She read a description of the diagnosis to me and asked if I had any questions. I had plenty but I couldn’t think straight.

“I’m so sorry,” she said. “It’s really no better than the sonographer’s original thoughts. You can come back for a chat if you like. Most people with this diagnosis terminate the pregnancy. If you decide to do that, I can make the arrangements.” She promised to call back after the weekend.

I sat there and cried.

I texted my friend to come around as my husband was at work. I wouldn’t phone him at work, regardless of the result. My parents came over, too. They collected the girls from school and took them swimming. I sat and cried, spent some time consulting “Dr. Google,” and cried some more.

The “least shitty” option

My husband got home. I didn’t need to say anything. We just hugged and cried. Then we semi-composed ourselves. We had to make a choice between rock and hard place, shitty or shittier.

We couldn’t put our baby, our living children, our family through this. Terminating the pregnancy seemed like the least shitty option for us. Our baby wouldn’t know pain. We felt our living children would be better off not meeting their new sibling who would die shortly after birth. Our girls would have been without us while we remained at the hospital, awaiting the inevitable. I wasn’t sure I could do this but the alternative was worse.

We couldn’t get the injections to stop the baby’s heart for over a week because the only two doctors who performed it were on holiday. I was horrified to learn they planned to admit me to the labour ward for induction. Surely, it would be cruel to place us with newborns. Our MFM said there was a separate suite that we might be able to use, and she’d see what she could do.

All the waiting was torturous. I felt broken. My mental health, normally strong, really suffered. I couldn’t eat or sleep, let alone function. The whole of this time, I had no support. I felt very much alone.

The beginning of the end

On 12th June, at 23 weeks 5 days, we made the 2.5-hour journey to the women’s hospital to end our pregnancy.

The timing stung. By just two days, we missed out on our baby being registered. Not waiting is one of my big regrets. To anyone researching our family in the future, he wouldn’t exist for the sake of those two days. But the next available opening was six days later and things would apparently be more complicated after 24 weeks. The “in-between” was killing me: Feeling our baby kick. Dreading what was coming. I wasn’t eating, sleeping, or functioning. I couldn’t take proper care of our daughters. I was going to work but hiding from people and not doing much because my concentration was less than zero. I couldn’t possibly wait it out another week.

We arranged for my parents to take the girls to school and made the journey to the hospital, arriving early for the start of another long, traumatic day. We were ushered to a private side room where another lovely lady, Jane, came to talk us through the details of the day.

“I’m still not sure I can do this,” I said.

Jane said, “You don’t have to. It’s your choice.”

This wasn’t helpful. I mean, how was I to lie still knowing that they were euthanising my baby? Signing forms for the termination broke my heart once more. Thinking about it makes me cry even now. I asked Jane to write “for T-13” on the form, which she did. I signed my child’s life away whilst sobbing my heart out.

They gave me Lorazepam to help relax me and hopefully put me on another planet. I took the pills and promptly threw them up. Jane gave me two more.

An hour later, we went to the scan room and I laid on the bed for the lethal injection. The meds spaced me out but I was awake and aware. The doctors didn’t even turn away the monitor whilst injecting my baby. I watched, horrified, as the needle went in. My baby’s heartbeat slowed, then stopped. It felt like I was watching it happen to someone else as tears streamed down my face. My husband stayed by my side, also unable to look away from the screen.

Afterward, we were taken to our room. They gave me a tablet to ready my body for labour. We were kept for a while before they allowed us to leave. Labour would not start for two more days.

Once home, I was done in. I struggled to take the girls to bed. Wanting me, they had refused to sleep for my mum.

Two days later, we journeyed to the hospital to give birth. We were given the butterfly suite, which is a bereavement room. I was thankful to avoid the labour ward. It would have been a nice room if not for the sad circumstances.

With the paperwork and bloodwork done, they inserted the first pessary to induce my labour. I’d given birth twice before but I had no idea what to expect from an induction. It was now a waiting game. Due to the speed of my prior labours, I was told to call the midwife as soon as I felt anything. We were given lunch (which I couldn’t eat) and sandwiches to put in the fridge for later.

Our little boy, Finn

The midwife took my blood pressure several times over the next few hours. Around 5:00 pm I felt a slight change. By 6:00 pm I was moved to the labour room. I was violently sick many times so they gave me anti-nausea injections. By now, I was in severe pain, partly due to nerves and knowing there was no happy ending and no baby to take home, and partly due to being induced. I was then given diamorphine. As the baby was born, I told the midwife that this one felt like a tennis ball coming out rather than a football.

Our little boy, Finn, was born at 7:49 pm. We’d always kept the baby’s sex a surprise until birth. It was almost worse learning we had a boy. With two girls already, he really would have completed our little family.

In military time, 7:49 pm is 1949. My mum’s year of birth was 1949. This gave us an added link, a way of remembering the time of Finn’s birth.

My husband didn’t want to see our little boy, but I did. They whisked the baby away. I would see him later, while my husband went for a walk. When they brought Finn to me he was unexpectedly wrinkly. He was also cold, which upset me, and so tiny. He was 1 lb, 13 oz, and 27 cm long. Apparently, this is considered a decent size for the length of gestation.

The fog of grief

I spent the first days after Finn’s birth in a heavy fog that lifted slowly. For a few weeks, I woke at 1:00 am and 4:00 am from dreams of a baby crying to be fed. My milk had come in and would let down. This was like rubbing salt in the wound. Reality would set in and I’d cry myself back to sleep.

Dreams and nightmares of our diagnosis and procedures made every night an ordeal. I had flashbacks during the daytime, too. It was mental torment for weeks. I walked around in a daze. Not long after the abortion, I burned my hand on the grill cooking the kids dinner and didn’t realise until a friend mentioned they smelled burning. It was my skin. I felt nothing until afterward.

People didn’t know what to say. Some literally crossed the street to avoid me. Some said stupid things. Some tried to compare my loss to early miscarriages, or their dog dying. One even told me selling his Caravan was like losing a child. Boy, was I mad at him. And so was his wife.

As time passes, the grief remains. I’m much more emotional than I ever was before. But the grief has grown far less intense than in those early days and weeks.

Post-termination, I was desperate to get pregnant again. My husband was not. However, he agreed to try again on the condition we waited six months to make sure this wasn’t a rebound reaction. Before Finn, we hadn’t intended to try for more children.

After six months, we started trying to conceive. I expected to fall pregnant immediately as had always happened before, although I was now much older. It took four months for me to get pregnant. Unfortunately, this one ended in a missed miscarriage discovered at 11 weeks, 5 days. But, because I’d suspected a problem, I was upset but also relieved that I didn’t have to go through another abortion.

Our next pregnancy

Our next pregnancy took nine months to conceive. As of this writing, I am 25 weeks pregnant with a healthy baby. This pregnancy has been filled with anxiety. In the early weeks, I was convinced there would be a reoccurrence. I’d always enjoyed pregnancy before. Our diagnosis and termination experience took away my naivety and enjoyment. I’m hoping, as time goes on, I will relax and feel better about this pregnancy. Maybe I will even enjoy what’s left of it. So far, I’ve done nothing to prepare for this baby’s arrival.

Finding Ending a Wanted Pregnancy’s Private Support Group a few weeks post-termination was amazing. I connected with people who totally understood. Hearing from others further along in the grieving process became my key to survival.

 

Photo by Fa Barboza on Unsplash