Thomas
In writing this story, it was hard to know whether I should focus more on the emotional aspect, or the practical aspect. I have leaned towards the latter, in the hope that my words may be of some practical assistance to other parents.
The twelve-week scan went smoothly. In my first pregnancy, I’d had a high risk reading for Down’s syndrome, but that prior experience was no preparation for the results I was about to receive. The combined test came back with a 1 in 2 chance for Trisomy 18, Edwards’ syndrome, and a 1 in 40 chance for Trisomy 13, Patau’s syndrome. I can’t recall much more about the conversation with the hospital that day, but I do remember bursting into tears, so on some level I had understood the gravity of the situation.
We knew nothing about Trisomy 18 or Trisomy 13. After only a short amount of internet research, we realised how serious both syndromes are. It was gut-wrenching and overwhelming.
My initial response was that we had no choice – end the pregnancy, move on, try again. The statistics were against us. Conscious of being an ‘older mum’, I didn’t feel that I could afford to wait.
A day later, I felt differently. Even at 1 in 2, there is a 50% chance that the baby is still ‘normal’ (gosh, I dislike that description, but I don’t know how else to frame it). We thought about the next stage – testing. The NIPT test seemed far from conclusive, and we wanted certainty. I booked in for an amniocentesis at around 15 weeks. The hospital staff were supportive and provided us with information about groups such as ARC UK and SOFT UK. We were told about what was involved in ending a pregnancy. This seemed to be the main focus of the information provision.
The wait was extremely trying. During those few weeks, we continued to read about Trisomy 18 and Trisomy 13, but we didn’t dive into it deeply, as we felt that the combined test result was a red herring, and that actually everything was fine. As a precaution, we put a few major things on hold – buying a bigger car, looking for a new house.
The amniocentesis procedure was confronting. Watching a needle get so close to a precious baby is scary. However, it all went well. The consultant spent a long time looking at the baby, and there were no signs of abnormalities. We left the hospital increasingly confident in our red herring assumption.
It took a painfully long six days for the amniocentesis result to come back. The news was bad. Trisomy 18 was confirmed. I was devastated. We clung to a slither of what was almost certainly false hope. Even an amniocentesis is not 100% accurate – false positives can happen. We were struggling to reconcile the diagnosis with fact that the 15-week scan images were fine. After another meeting at the hospital, we decided to defer any decision. We booked in for another ultrasound scan at around 18 weeks. Our logic was that if the diagnosis was correct, then we would most likely be able to see some sign of Trisomy 18 on the scan, and we could then make a fully informed decision. And what if the scan showed no abnormalities? We didn’t know the answer to that question at the time.
The weeks after the diagnosis were exhausting. Our emotions were all over the place. We spent all our free time researching Trisomy 18. Through SOFT UK, we managed to speak with a mother who had given birth to a baby with Trisomy 18, and that was incredibly helpful. Statistics regarding outcomes with the syndrome are quite easy to find, but what we most needed were real life stories. We found blogs and groups on social media. Slowly we built up our understanding.
I would wake up one day convinced that we should continue the pregnancy. The next day I would feel the opposite. My husband had a similar experience. We tried to imagine all the scenarios – our baby not making it to birth, our baby living for a day or two, our baby living for a week, a month, a year, a decade. What would each scenario feel like, what would each scenario mean in practical terms? What would the experience be like for our baby? After about a week of this, we settled on a decision.
We were ready to handle whatever came – it was going to be tough, but that was what we needed to do. Our baby deserved a chance.
The initial amniocentesis report didn’t provide the whole picture. It didn’t specify whether the trisomy was full, partial or mosaic, or confirm the sex. These pieces of information are quite important, as the impact of Trisomy 18 can vary with these factors. It took another week to get the full report. Our baby was a boy, with full Trisomy 18. We named him Thomas.
Neither of us slept much the night before the 18-week scan. We still clung to a tiny bit of hope that there would be no visual signs of the syndrome. Sadly, the scan revealed that Thomas had a large hole in his heart. His brain was showing abnormal development, both to the front and rear. There was absolutely no doubt about what we were looking at.
The results of the scan didn’t change things. I still wanted to continue the pregnancy. We asked the hospital to organise appointments to discuss what might happen at the birth, what treatment would be made available to Thomas. We asked for information about the support that would be available to us as a family caring for a child with Trisomy 18. A week later, and we still had no confirmation of an appointment – it was hard to line up the various people involved.
It felt as though the hospital was geared towards ending pregnancies in such situations, and not well set up to help parents understand the birth and post birth scenarios. To be frank, this wasn’t a surprise. We had picked up on the theme of ‘incompatible with life’ during our research.
Perhaps it was our sensitivity about the medical profession’s leanings towards ‘incompatible with life’, but up until this point, we had hesitated to speak with two very good friends who were paediatricians. It turns out that they had both had exposure to Trisomy 18. They gave us a no-holds-barred assessment about the medical challenges for Trisomy 18 babies and children. They also helped us to understand the level of care and support that was likely to be available under the NHS. It was a gloomy picture. However, even this didn’t change our view.
Talking to our doctor friends had an unexpected consequence. To bring Thomas into the world, we had to be prepared to deal with all scenarios, many of which would involve frequent hospital visits and stays. In putting so much focus on Thomas, and what his needs might be, we had somehow managed to put the needs of our two young children, just three and five years old, into the background. Platitudes like ‘they’ll be fine, kids are adaptable’ had run through our minds as justification. Such platitudes were the exact opposite of how we had approached parenting to date. Were we, in wanting to feel ‘good’ that we were doing everything possible for Thomas, in some way being selfish? Would our two little girls pay the price for our selfishness?
Ultimately, we felt that there was no ‘right’ decision. It seemed that whatever choice we would make, it would be imperfect.
And that we would, at certain times in the future, regret it. Parents in these situations face an impossible choice. It is an absolutely awful position to be in.
I hesitate here to make what I think is an important point. External factors cannot be ignored. Had we felt that the medical and care professions were ready and able to proactively care for Thomas, and the broader needs of our family, I think that our decision may have been different. That level of care and support would need to be very high. Is it unreasonable to expect such things? I think not, but I’m not confident it will become a reality in the UK.
After the emotional turmoil of deciding to end the pregnancy, it was a struggle to find the strength to decide between a surgical termination and induced labour. It felt important to see my little boy, and so I opted for induced labour. Again, there is no ‘right’ decision here, but for me, I know that I will never regret my choice.
At twenty weeks, supported by a very caring team of staff at the local hospital, I gave birth to baby Thomas. Our love for Thomas is as deep as it is for our two little girls. Thomas will always be a part of our family.