Our t13 story
After two children who didn't sleep well and several miscarriages, hubby said “No more! We can't keep going on like this.” I reluctantly agreed to stop trying. Once the decision was made, I eventually made peace with our little family, even though I'd always wanted more children.
Fast forward about four and a half years to early 2018. I had a funny feeling I was pregnant, despite not missing a pill. I couldn't shake the feeling, so stopped drinking, took vitamins and waited until I could test.
I had mentioned it to my husband who said: “highly unlikely, maybe you're starting early on with the change.” A week or so later with a positive test in my hand I sat on the bathroom floor. That morning I hadn't intended to tell my husband that I had tested, let alone the result if positive, until after work, but he knew.
That evening we chatted. He would prefer I had an abortion (we're too old now and the kids are growing up and now life is starting to get easier). But he would go along with whatever I decided.
I went as far as Googling abortions and broke down - despite being pro-choice I never thought I would have an abortion and I knew I couldn't give this baby up... if it stuck/ the pregnancy lasted.
I checked my due date, it was the same due date as my living children, so I knew then that this baby was 'meant to be'.
I spent the next few weeks terrified of another miscarriage. Fast forward to twelve weeks. By now we were both happy that our family was to be extended, despite the initial shock. We'd made it to twelve weeks, so hopefully baby would be ok now.
The twelve-week scan all looked good - 'perfect'. The estimated delivery date was confirmed, so it was obviously 'meant to be'. I was in no doubt that this baby too would arrive two days early!
That evening we showed our parents and our children the scan picture.
I was still terrified of a further miscarriage. We made sixteen weeks (what I considered to be my personal 'safe' zone/ stage) and began to tell people & organise things. My job is seasonal, so I knew I'd have no time to do anything during the summer season, so I had to get organised. We were given lots of baby items, bought some others and got organised. By our twenty-week anatomy scan - just at the beginning of the summer season, the scan was organised for during our dinner break. Not for one minute did we expect a problem (in fact I almost went alone).
The scan took ages, the sonographer kept going back to the baby’s heart. Initially I was thinking “hurry up, we need to get back to work!” But after a while, my concerns grew. She eventually said our baby had a cleft lip. “Phew, if that's all”, I thought. But I also felt guilt, wondering if it was my fault for not taking folic acid before I knew about the pregnancy. Why hadn't I just taken folic acid until I was beyond being able to get pregnant? But she stated she could also see some problems with the heart, suspected Hypoplastic left heart syndrome (HLHS).
After a few calls, an appointment was booked for the following day with a specialist in the main hospital where we were scheduled for the birth. We would get a call later to confirm the time.
We drove back to work (hubby dropped me off en-route), and we were both utterly stunned. My husband cried all the way. Wondering if it was his fault for not wanting the child etc. I was numb. No tears. I had to stay composed for work and until I picked the kids up from school or even until they were in bed. We both returned to work late. I collected the kids and had the promised play date at our house that I had almost forgotten about in my haze. Luckily it was with a couple of kids whose Mum I really liked and felt a connection with. We had started to form a close friendship.
I managed to tell the Mum whose children was at ours about the scan and a possible problem needing another scan etc. This lady has become one of my most trusted and closest friends and has been there through thick and thin for me, even collecting my kids from school in the dark days when I just couldn't.
The call came for our appointment, set for four pm the following day.
That evening once the kids were in bed, we researched HLHS. It was not good. Our baby was going to be spending a lot of time in hospital, but we would have to do it. Perhaps I'd have to give up work. At this point termination didn't even enter my head.
My husband remembered the sonographer had also mentioned the brain hadn't divided properly. I hadn't taken this bit in; this was a big concern. But hopefully it wouldn’t happen, or she was wrong.
We went to bed, and I broke down. Neither of us slept much that night (or for a long time after).
The next day was one of the longest days of our lives. After dropping the kids at school, we phoned the hospital to say we were available earlier if there were any cancellations. We drove the long distance towards the hospital and went to the wholesalers to waste time. I cried most of the way around. My husband at this stage being the stronger/ numb one.
We arrived before our appointment time at the hospital in hope of getting seen early. They were running late. We were eventually seen after five pm. The waiting (start of much waiting) was beyond torture. Listening to this stupid woman sitting opposite me whose appointment was just before ours was excruciating.... she was twenty-eight weeks pregnant and couldn't wait to get out as she was 'gagging for a fag' and she was late to meet her mates for a beer! (I'm not a violent person but I could have happily hit her). There we were, worrying about our baby, hoping he/ she would be ok, would live and she was wanting to go out and smoke and drink and not care about hers. How unfair is that? She kept trying to make conversation. I kept my head down half reading my book not caring if she thought I was being rude.
The maternal-fetal midwife apologised many times for the wait. I was desperate for a wee and she told me to just have one, because of the late stage of pregnancy she didn't think it would be a problem.
Eventually we got into the scan room... a lovely gentleman of about sixty introduced himself and began the scan.
After a long time, the consultant eventually told us he could see many issues with our baby; cleft lip and probable cleft pallet being least of the worries; Hypoplastic left heart syndrome, severe brain abnormalities, several other abnormalities, he suspected t18 (Edward’s syndrome). He told us he had forty plus years' experience and in his 'educated opinion' it was t18 or similar, and as much as he would like to be wrong, he wouldn't say it if he wasn't certain. We had never heard of Edwards syndrome and once he explained, we were beyond heartbroken. He said we needed (the dreaded) amnio to confirm. He would do nothing and make no recommendations without it.
The consultant and midwife couldn't have been nicer. No rush despite it being well after their time to go home. They offered us tea before the long journey home, which we declined. We got to the carpark (let out through a back door) and fell into each other's arms. We were good people; we always help others what had we done to deserve this.
The journey home was a complete blur.
I had the amnio two days later - it was the start of the bank holiday. Signing for it hurt especially when the lady doctor explained out loud miscarriage/ preterm labour chances etc... It wasn't physically as bad as I thought... there was no pain just the scratch of the needle. I think I was just numb, but silent tears flowed.
I was so mixed up... if it was t18 I hoped for a miscarriage/ to be sent into early labour. If it wasn't, I didn't want to lose the baby. I felt awful wishing the baby any harm. I just hoped and prayed (as in the song, to a god I don't believe in) for a miracle.
I was told to rest so had to have a few days off work. That made me feel awful - my colleagues having to do extra at an already busy time to cover me. But I couldn't take the chance. What if working caused me to lose my baby and it didn't have t18. Anyway, they could sort whatever was wrong with him or her. Despite the severity of abnormalities there was still part of me very much clutching at straws, living in hope that there was some sort of mistake, and my baby would be ok.
The lovely maternal-fetal midwife phoned on Friday afternoon. The hospital forgot to send my amnio off immediately. That plus a bank holiday meant delayed results, as my fluids now wouldn't go until Tuesday. The fluids would save a second journey and amnio a second time but meaning about ten days before I got the results.
The waiting time that followed was a further agonising blur.
Results were phoned to me on the following Friday afternoon by the lovely maternal-fetal midwife (phoned rather than going in because of distance). “Are you sitting down” (yes). “Is there anyone with you” (no). “Do you want to get someone” (no) “It's not t18.” Phew, I felt instant relief, but only very briefly... “However, it's a very similar condition, it's t13” she stated. She read me the blurb from the book about t13 and asked if I had any questions. There were plenty, but I couldn't think straight... “I'm so sorry, it's no better than the consultants' original thoughts. You can come back for a chat if you like, however most people with this diagnosis terminate. But it's your call. If you decide to do this, I can make the arrangements.” She promised to call back after the weekend.
I sat there and just cried.
I texted my best friend to come around as my husband was at work. I had said I wouldn't phone him regardless of result. My parents came afterwards too. They went off to collect the kids from school and take them swimming. I sat and cried and consulted Dr Google and cried some more.
My husband got home. I didn't need to say anything we just stood there hugging and crying.
My parents brought the kids back from swimming. By then we had made a choice. One that didn't seem like much of a choice - we were between a rock and a hard place; we had come to the decision to do the unthinkable and end this very wanted pregnancy as the alternative was worse.
It was time to put our best acting into practice and pretend all was normal for the kids, it was so hard.
Over the weekend I Googled late abortions, as I didn't know what to expect. There was little content to help, all pointing to d&e, seaweed sticks/ laminaria and mainly early abortion. I spent most of the weekend in tears hiding. The shower became my favourite place where I could let it all out without being heard or seen.
On Monday I spoke to the maternal-fetal midwife with our heart-breaking decision, and she went off to sort everything out for us. I would have to give birth as we were now well over 20 weeks. This killed me a little bit more, how could I give birth to a baby that wouldn't survive or was dead. It was heart-breaking. I didn't want to do this but the alternative, the long-term suffering of my baby and my family was worse. I couldn't knowingly bring a child into this world to simply suffer and die. To add salt to the wound my fears were confirmed that this would likely be on the labour ward, full of new-born babies. But there was one bereavement room in the hospital which I might be able to use.
I was told due to the stage of pregnancy I would be given an injection to stop our baby’s heart. Due to holidays, we couldn't get the injection for over a week as the only two doctors who performed it were both on holiday (eye roll). This brought me to twenty-three weeks, five days. Although many countries provide a birth certificate after twenty weeks, here there's no birth certificate until twenty-four weeks. So close! I wanted to wait the extra two days but was told the next appointment was six days later.... I just couldn't cope any longer.
All the waiting was beyond torture. I was completely broken. My mental health (normally so strong) was really suffering. I couldn't eat or sleep, let alone function by now. I was neglecting my family, my home, my job, myself and everything.
The whole of this time there was no professional support. My immediate family although supportive just didn't understand. My aunt had to Google the diagnosis before she said would support us. I felt very much alone and was terrified of judgement. I just couldn't cope with any form of judgement.
I had contact with a lovely lady from SOFT, with the same diagnosis, but she had followed through with her pregnancy (the baby had died not long after birth) and now had a young rainbow baby. It made it a little awkward/ not quite the support I needed, as she had to go off to see to the baby at times, understandable but triggering. She was helpful, didn't judge and was good to talk to and checked in on me a few times over the following weeks.
On 12th June at twenty-three weeks five days, we made the two-and-a-half-hour journey to the Women's Hospital to get the injection to euthanize our baby.
The timing stung.... by two days we missed out on his being registered. To anyone later researching our family he wouldn't exist. Not waiting is one of my big regrets, and the cause of much additional pain. But the next available appointment was six days later, and things would apparently be more complicated after twenty-four weeks (plus this was killing me mentally). I couldn't wait another week. I couldn't eat, sleep or function.... my mental health was suffering big time; I couldn't properly take care of the two living children I had. I was going to work but hiding from people and not doing much work as my concentration was less than zero. Not waiting is my biggest regret... but looking back I just couldn't cope any longer.
The day for the injection to stop our baby's heart arrived (I wasn't even sure I could go through with it, but the alternative was worse). We had arranged for my parents to take the kids to school and made the journey - the start of another very long, traumatic day arriving early at the Women Hospital.... we were ushered to a nice private side room where another lovely lady came to talk us through the day/ details.
I remember saying I'm still not sure I can do this, and she said, “you don't have to, it's your choice” (this wasn't helping!) I mean how do I lie still knowing that they are euthanising my very wanted baby, but if I don't do it how can I knowingly let my baby be born just to suffer.
There were forms to fill out - signing for a termination broke my heart once more (thinking about it makes my cry now!) I asked her to write for t13 on the form, which she did, and signed my child's life away whilst sobbing my heart out (I'm also sobbing writing this story out!).
I was offered/ given lorazepam to relax me/ hopefully put me on another planet.... I promptly threw up!
She gave me 2 more (I’d prefer to have 4 than none!). There was an hour's wait before I went to the scan room where I lay on the bed for that lethal injection. The meds spaced me, but I was awake and aware. They didn't even turn the monitor whilst injecting my baby, and I watched with a sort of horrified fascination as the needle went in and babies' heartbeat slowed then stopped. I felt almost like I was watching it happen to someone else but was aware of the hot tears streaming down my face.
Afterwards we were taken back to 'our waiting room' and I was given a tablet to ready my body for labour. We were kept for a while and allowed to go to my aunt's (who lived nearby). They didn't want us to travel home for a couple of hours. Other than sitting at the table trying to eat a sandwich, I remember little of being there and little of any of the journey home. At home I was done in. I struggled to take the kids to bed as they had refused to sleep for my Mum, wanting me.
Two days later having planned for the kids to stay at a friend's overnight, we left my parents to take them to school and started our journey to the hospital to give birth. In my haze I forgot my birthing/ baby notes (which I'd even hung on the door, so I didn't forget!). Halfway there I remembered, and we had to turn back, phoning the hospital who confirmed I needed the notes to be admitted. So, my parents met us part way with the book/ notes.
We eventually arrived at the hospital for another long, dreadful day.
We were shown into the Butterfly Suite, a lovely suite for an awful reason, however it was a huge relief that it was available, and I didn't have to be on the labour ward.
Paperwork done, bloods, blood pressure taken and about two/ three hours later the first pessary to induce me was inserted. Despite having given birth twice before I had no idea what to expect from being induced. 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 left sandwiches for later. I read a book, although struggled to concentrate. The midwife came backwards and forwards taking my blood pressure several times over the next few hours. At approx. 17:00 I felt a slight change in my stomach. The midwife came by soon after six pm and I was moved to the labour room. I was violently sick many times, given anti sickness injections. By now I was in severe pain (much worse than with previous labours, possibly part due to nerves and knowing there was no happy ending/baby to take home and partly due to being induced). I was then given diamorphine (I had no pain relief/ gas & air only with my previous labours). Our little boy was born at 19:49 hrs. It was somehow almost worse, salt in the wound that it was a boy because it really would have completed our little family (until the birth we didn't know, our baby's sex has always been kept a surprise until the birth).
I remember saying to the midwife as he was born that this one felt like a tennis ball coming out rather than a football!
My husband didn't want to see our little boy, but I did, so he was whisked away. I would see him later and my husband would go for a walk.
Our son was tiny, almost 2lb. Despite everything, he was perfect to me and I'm glad I held him, although I wish I had held him when he was warm and for longer. I wish I had pictures of me holding him and taken casts of his tiny hands and feet.
The first days were like being in a heavy fog. But very slowly the fog lifted. For a few weeks I would wake at 1am and 4am to a baby crying (obviously dreams or in my head). To add to my trauma, for the first week or so, my milk had come in and would be squirting out like a fountain.
Dreams and nightmares became my every night ordeal. My sleep was not restored at all for about twenty-six months when our rainbow arrived. (Although there was some improvement after about 18 months). Almost five years later although not severe I still suffer from post-traumatic stress disorder.
People did not know what to say. Some literally crossed the street to avoid me, and some said stupid things, trying to compare myloss to early miscarriagess, a dog dying etc. One man even told me selling his caravan was like losing a child! (Boy was I sad and mad, and so was his wife!).
“At least” become dreaded words: “at least you can have another”, “at least you already have two”, “at least he wasn't full term” and so it went on. Please, people reading this, never use 'at least' when talking to the bereaved.
When you lose a baby or feel like everyone is announcing a pregnancy or having/ had a baby, a new-born/ young baby is enough to bring you to your knees/ reduce you to tears. There seems to be more babies than ever wherever you go. I unfollowed half my Facebook friends and stopped browsing Facebook for a long time.
In a room full of people, you are left feeling lonely. It's a grief that cannot be comprehended if you haven't been there. The fact that we have a 'choice' in the demise of our child and that many of us feel we must hide that, adds another layer to the grief process. The guilt and regrets still catch me from time to time. Terminating a pregnancy, especially at a late stage carries a huge stigma. So many, including myself, feel forced to be economical with the truth. We are forced underground so to speak, making it an extremely lonely and difficult journey. It feels like Mums who carry to term are praised for their strength. The unspoken words feeling like we are not good mums... I don't regret my decision for one moment. I couldn't let my son suffer (although I also totally support those who make a different decision. It’s a terrible decision to have to face).
I am fortunate to have had excellent care and the support of a truly wonderful husband, parents and a few very good friends, and the support of a wonderful compassionate GP post loss/ termination. I have also come across some not so compassionate health/ hospital workers in my aftercare. The mental health support was unfortunately zero until I was pregnant again, where perinatal support got involved late in my pregnancy as I was concerned, I wasn't bonding. They were great.
I found the EWP (ending a wanted pregnancy) group on Facebook after a few weeks which was a lifeline. I also later found and joined ‘termination for medical reasons’ group on Facebook. It helps you not feel so alone.
As time passes the grief is very much still there and I'm much more emotional than I ever was before... but the grief is much less intense than the early days and weeks.
I am forever changed by this experience. I never wanted an abortion but am forever grateful I could have one. Please don't take away a woman's right to healthcare. Abortion is healthcare, whatever the reasons behind it. Please don't make women feel ashamed for protecting their unborn babies or for protecting themselves.
I support every single reason someone may choose to have an abortion. I trust that women can make their own medical choices. I also support those who have a baby with abnormalities and decide to carry to term.