My story starts in my 30s after a split from my partner of many years, assumed I would then be single for a long time but then quickly finding my soul mate, marrying and deciding I did want kids after all! We had a couple of years together then decided due to age if we wanted children we had to do it soon. I'd always drifted between wanting 4 kids or none! Nothing in-between. I came from a family of 2 kids who never got on, as did my husband, looking in on my cousins family of 4 kids they always seemed to get on so much better and have so much more fun!
Our reproductive story had a disappointing start with a miscarriage at just over 9 weeks, I was on holiday at the time, not a nice experience but I guessed lots of women had miscarriages and after a day or two I pulled myself together and got on with enjoying the rest of my holiday and trying to enjoy the fact that I could take advantage of the all inclusive drinks! I later felt guilty about this and flying for our holiday, which although unknown to me at the time combined with my blood disorder probably caused the miscarriage.
We went on to have 2 girls in quick concession - 12 months between them.
After a couple of years we started to try again, had several more miscarriages, mainly at 5/6 weeks. This combined with our two children by now not sleeping well made my husband put his foot down & said no more! We can't keep going on like this.... After a while I reluctantly agreed.
For a while I hankered after more children but eventually I felt at peace with our little family despite fact I had always wanted more children.
Forward about 4 years.... 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 & waited until I could test. My husband suggested maybe it was early menopause! (I had just turned 41).
About 2 weeks later I took a test, to my shock was positive I sat on the bathroom floor, shit oh shit.
That evening my husband and I discussed the pregnancy, he would prefer I had an abortion (we're too old now & the kids growing up & now life starting to get easier, we agreed to stop at the two after everything) but would go along with whatever I decided.
I started googling abortions and broke down - despite being pro choice I never ever thought I would have an abortion and I knew I couldn't abort even at that early stage what I assumed was a healthy baby... we talked again and agreed to continue with the pregnancy, I commented that I would probably miscarry anyway.
I checked my due date, it was exactly the same due date as both my girls, I knew then this baby was 'meant to be'.
I spent the next few weeks terrified of another miscarriage.
Week by week the chances of this baby making it increased, I constantly ran my own chance of survival chart in my head.
By the time we got to the 12 week scan we were both happy that our family was to be extended, despite the initial shock and assumed we now had a good chance of baby making it.
We declined Amniocentesis tests etc. as didn't want to add to our chances of miscarriage. I wasn't concerned enough about Trisomy 21 (T21) (as I knew it at that point, my opinion has since changed having read a lot about T21 during our sub pregnancy) to consider terminating if baby had it. The chances of the other chromosome issues were so minimal (I remember having this exact conversation with my midwife, who was in her late 50s, who had never personally known anyone diagnosed with T13 or T18). The chances of miscarriage with amnio are much greater than any of the chromosome issues, despite my age.
12w scan all looked good 'perfect'..... EDD confirmed same EDD as that of our two living children (who both arrived 2 days early) - Obviously 'meant to be' no doubt in my mind this baby too would arrive 2 days early!
That evening we showed our parents & our children the scan picture....
I was still terrified of a miscarriage. We made 16w (my personal 'safe' zone/stage) and began to tell our wider circle of family and friends.
It transpired my cousins second child was due 7 weeks before us, how exciting, our kids would grow up together, best friends as we were.
I then started collecting baby items, mainly donated by family and friends (my job is seasonal so knew no time to do anything during the summer season so had to get organised). By 20 week scan I was pretty much organised, little did I know that the bottom of my world was just about to drop out.
We managed to organise our 20w scan for during dinner break... Not for one minute did we expect a problem.
The scan took ages, she kept going back to babies heart.... Initially I was thinking hurry up we need to get back to work, but after a while my concerns grew. I was asked to move this way and that way, go empty my bladder etc. Eventually the sonographer said our baby had a cleft lip.... I breathed, phew, not good but obviously hadn't been on prenatals for the early part of pregnancy as not planned, an operation could sort, nothing major to worry about. She kept scanning then announced there's also some problems with the heart, we pushed for her thoughts, she suspected Hypoplastic left heart syndrome (HLHS).
After a few calls an appointment was scheduled for the following day with a specialist in the main hospital where we were scheduled for the birth (1.5h from our home), we would get a call later to confirm the time.
We drove back to work, arriving very late (hubby dropping me off at mine on route) stunned. My husband cried all the way, was it his fault for not wanting the child etc.... I was totally numb. No tears, I had to stay composed. I had to get through the rest of the day at work, pick the kids up and a playdate.
Luckily the playdate was at our house with a couple of kids who's mum I really liked and felt a connection with, we too had started to form a friendship.
I even managed to tell the mum who's children were at ours about the scan and a possible problem needing another scan etc. This lady has since 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 eventually came our appointment set for 4pm.
That evening once the kids were in bed we researched HLHS, not good, our baby was going to be spending a lot of time in hospital. The sonographer had also mentioned the brain hadn't divided properly, this was a big concern but hopefully it would happen later 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 (18 months later my sleeping was still terrible).
The next day was the longest day of our lives.... Dropping the kids at school we set off to the wholesalers to waste time waiting for our appointment I cried most of the way around. My husband at this stage being the stronger/numb one.
We arrived an hour early for our appointment at the hospital in hope of getting seen early but they were running late. It was gone 5pm when we eventually got into the room. Little did we know this waiting was the start of much waiting. The wait was beyond torture.... Listening to a stupid, uneducated woman sat opposite me who's appointment was just before ours was excruciating.... She was 28 weeks pregnant and couldn't wait to get out of the hospital so she could have a cigarette and she was late meeting her mates for a beer! (I could have happily punched her, there's us worrying about our baby hoping he/she would be ok, would live even & she wanting to go out to smoke and drink not caring about her baby) she kept trying to make conversation I kept my head down half reading my book unable to concentrate.
The MFM apologised many times for the wait. I was desperate for a wee and she told me to just have one, because of the stage of pregnancy she didn't think it would be a problem if my bladder wasn't full.
Eventually we got into the scan room..... The consultant, a lovely gentleman probing his 60s introduced himself and began the scan.
After a long time in the scan room the consultant eventually told us he could see many issues with our baby; cleft lip & probably pallet being least of the worries; HLHS, brain abnormalities the main/severe and he suspected T18. He told us he had 40+ 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 fairly certain. We had never heard of Edwards and once he explained we were beyond heartbroken. He said we needed (the dreaded) amnio to confirm.
The consultant and MFM couldn't have been nicer, no rush to leave despite it being well after their time to go home, offered us tea before the journey home, which we declined, wished us safe journey etc.
We got to the carpark (let out through a back door) and fell into each others arms. We were good people, we help others, my husband is a pharmacist health care worker, he spends his life helping others - what had we done to deserve this.
The journey home was a complete blur.
I had the amino 2 days later - It was the start of the bank holiday. Signing for it stung so badly especially when the lady doctor explained out loud miscarriage chances etc.... It wasn't physically as bad as I thought.... There was no pain just the scratch of the needle.... Although no physical pain would compare to the mental pain.
I was so mixed up.... If it was T18 I hoped for a miscarriage/to go into labour, if it wasn't I didn't want to lose the baby. I felt awful wishing for a miscarriage. I hoped for a miracle.
I 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 a miscarriage and my baby didn't have T18. ... and they could sort whatever was wrong with him or her (despite the severity of abnormalities there was still a huge part of me very much clutching at straws, living in hope)
The lovely MFM phoned Friday afternoon, hospital forgot to send my amnio off immediately, that plus a bank holiday meant delayed results, my fluids now wouldn't go until Tuesday. But thank goodness at least the fluids would save I didn't have to go through the amnio a second time.
The waiting time that followed was a further agonising blur.
Results were phoned through to me on the following Friday afternoon by the lovely MFM (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 - relief, but only very briefly, it's T13 she stated.... a similar diagnosis. She read me the blurb from the book 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 Mr Taylor's original thoughts, you can come back for a chat if you like, most people with this diagnosis also choose to discontinue the pregnancy. 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 text one of my best friends (who's basically family) 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 & 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 girls back from swimming, by then we had made a choice of sorts - rock & hard place, shitty or shittier.... there really wasn't a choice.
On Monday I spoke to the MFM with our heartbreaking decision, she went off to sort everything for us. We couldn't get the injections to stop babies heart for over a week as the only 2 doctors who performed it were on holiday (eye roll both at same time, really!? Why was this allowed).
All the waiting was beyond torture. I was beyond broken. My mental health (normally so strong) was really suffering. I couldn't eat or sleep let alone function by now.
The whole of this time there was no support. I felt very much alone.
One afternoon driving home from a school drop I even had a momentary thought how easy it would be to drive off the cliff, only for a moment as I then thought of my family but that moments thought scared me so much.
I had contact with a lovely lady from soft, but she had followed through with her pregnancy (the baby had died not long after birth) and now had a young rainbow baby which made it a little awkward/not quite the support I needed but she was helpful and good to talk to.
On 12th June at 23w 5d we made the 2.5h journey to the women's hospital to get the injection to euthanize our baby. The timing stung.... by 2 days we missed out on his birth being registered - to anyone at a later date researching our family he wouldn't exist (not waiting is one of my big regrets, the cause of much additional pain, but the next available 'slot' was 6 days later and things would apparently be more complicated after 24w 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 take care of the 2 children I had properly. I could drive and not even register the journey. 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). We had arranged for my parents to take the girls 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", 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 baby.
There were forms to fill - 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 was offered/given lorazepam to relax me/hopefully put me on another planet.... I promptly threw them back up! She gave me 2 more (prefer I had 4 than none!)... There was an hour's wait before I went to the scan room where I laid 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, 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 aware tears streaming down my face.
Afterwards we were taken back to 'our 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 if any of the journey home. At home I was done in, I struggled to take the girls to bed as they had refused to sleep for my mum, wanting me.
2 days later having made arrangements for the girls to stay at a friends overnight we left my parents to take them to school and started our 1.5h 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!) And half way I remembered and we had to turn back, phoning the hospital who confirmed I needed the notes to be admitted, mum & dad met us part way with the book/notes. We eventually arrived at the hospital for another long day. Paperwork done, bloods, blood pressure taken and about 2/3 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.
The midwife came backwards and forwards taking my blood pressure several times over the next few hours. At approx. 5.00 I felt a slight change in my stomach. The midwife came soon after by 6pm I was moved to the Labour room, I was violently sick many times, given antisickness injections. By now I was in pain (much worse than with the girls, 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 Finn was born at 1949hrs. It was almost worse, salt in the wound that it was a boy because a it really would have completed our little family (until the birth we didn't know, our babies 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 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 early days post termination were like being in a heavy fog, 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 when I woke in the night.
Dreams and nightmares became my every night ordeal. My sleep has still not been restored to normal, although has improved since our rainbow arrived. (Although there was some improvement after about 18 months)
People did not know what to say, some literally crossed the street to avoid me, adding to the feeling of isolation, some said such stupid things, some try to compare your loss to early miscarriages, dog dying? Etc.... one even told me selling his caravan was like losing a child!! (Boy was I sad and mad, and so was his wife!).
When you lose a baby or feels like everyone is announcing a pregnancy or having/had a baby.... A new born baby is enough to bring you to your knees even the thought or mention of can reduce you to tears.... and there seems to be more babies than ever wherever you go.
I unfollowed half my Facebook friends and stopped browsing Facebook.
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 have to hide our true/full story adds another layer to the grief process. The guilt and regrets still catch me from time to time.
I am fortunate to have had excellent care (although no follow up care from my midwife or the hospital) and the support of a wonderful husband, parents and a few very good friends, and also the support of a wonderful compassionate GP post termination. The ending a wanted pregnancy group on Facebook I found a few weeks after our loss was a lifeline. I also later found and joined termination for medical reasons group on Facebook.
As time passes the grief is very much still there and as a person I'm much more emotional than I ever was before.... but the grief is much less intense than the early days and weeks.
To learn more you can head to the following link Trisomy 13 or Patau syndrome
Jane
UK
Submitted 28/05/2021
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