Ayesha’s story

I remember finding out I was pregnant with Hannah like it was yesterday. It was July, lovely weather and not long after my first daughters christening. After struggling for over a year to fall pregnant with my first daughter, Bethany, I was overjoyed to find out I’d fallen unexpectedly with my second child.

Days turned into weeks and every scan we had seemed to be fine, but I had this weird feeling, looking at the scans, that something wasn’t quite right. But I’d had my blood test at 12 weeks and everything was low risk, so I must be paranoid… right?

In October, I turned 16 weeks pregnant, an exciting time as we booked a private scan to find out the baby’s gender. Was Bethany going to have a sister or a brother?! I remember that scan, what a bitter-sweet moment.

As the sonographer scanned my baby and I watched the screens, something didn’t look right to me, but I thought it’s obviously just me since no one had said anything. The sonographer then said, “there’s a small hernia on your baby’s tummy, nothing to worry about normally they go away by 20 weeks, just let your obstetrician know”. Something didn’t sit right with me when she said that. She looked at the baby’s genitals, it’s a girl she said! I was thrilled, another baby girl, I was already in love. I remember seeing her feet and thinking “they don’t look normal?” I didn’t say anything as again, thought it was just me.

My husband kept saying “stop worrying, it’s clearly fine like the sonographer said.” I work for the local hospital where my care was based, within fetal medicine as a secretary. So, I messaged the fetal medicine consultant who I work for and she told me to come in the next day for a scan to keep my nerves at ease.

12 October 2022, the day my life would change forever… The consultant scanned me for some time and said “well it’s not a hernia… it’s her hand”. I thought what!? How ridiculous; how could a trained sonographer get that wrong! I had a glimmer of relief thinking everything must be fine, but then, things took a turn for the worse. “Your baby has talipes.” My heart sank. This feeling that overcame me was a feeling that I felt in my bones, that type of deep pain that causes shock… I asked what that was. She said “it’s clubfoot, which is fine if it’s isolated. Normally means the baby is fine and her feet can be fixed with an operation or physio”. Relief overcame me again. Thank God, something fixable!

I knew something wasn’t right with her feet, but what about her hands? The consultant scanned and said “her hands haven’t moved and they are curled”. ”What does that mean?’’ I asked in total fear. “Looks like it could be arthrogryposis.” That was it, my heart sank again. I was on my own as my husband was working and all these thoughts rushed into my head. I burst into tears… I remember my consultant saying “oh Ayesha please don’t cry, it’s okay! There’s no confirmation yet, we have to wait 2 weeks to see if she’s moved again.” I couldn’t stop crying, I knew I just knew something wasn’t right. I managed to get a scan the next week as she knew how anxious I was.

That week wait was a week from hell; everything just felt doomed. I remember calling my husband after the scan and I said “something’s wrong”. I remember his voice, like he was shocked thinking it would all just be fine… but it wasn’t. That week I researched arthrogryposis and prepared for the worse.

19 October 2022, the final scan. My other consultant scanned me this time since the first consultant was away. A fresh pair of eyes would be good. The scan was very long and he was very quiet. He showed me her limbs, she couldn’t move any of them, she couldn’t move her fingers, her toes, her wrists, her neck, her shoulders. She was stiff. He told the fetal medicine nurse to take us into the snow drop room. I told my husband, “this is the sad room, it’s not good news”. The consultant walked in and said “Ayesha, I’m so sorry, it’s not good news”. I will never forget those words, they echo through me. My life revolves around my children and the love I have for them and that was it, my child was going to have to go to a better place…

I remember him explaining to us her condition, talking about decisions and what outcomes we could choose on our baby. I remember sitting there feeling like there wasn’t a decision, I knew for the sake of our beautiful baby daughter we had to terminate, so she could be free from pain and suffering. He told us that she most likely wouldn’t go full term or even survive birth and if she did, due to the severity of the arthrogryposis, she wouldn’t survive past the age of one… He said she would endure many surgeries in her short life and that mine would be spent mostly in hospital with her. What life would that leave for my living daughter Bethany? She was only 15 months at this time, she needed her mummy too.

Making the decision to terminate never felt right and I guess it never will. Deciding to end your baby’s life is the hardest decision you could ever have to make. Being dealt this card had landed me with the lifetime of guilt that will never leave me but how I try to see it now is that I made the ultimate sacrifice that only a mother could make. I sacrificed my own mental well-being, I sacrificed everything I believed in so that my daughter would not suffer and instead I suffer the pain of her absence. I remember making the decision and the consultant going to get the legal forms for us to sign. As he left the room, I clenched my bump and all I could say was “oh God, I’m so sorry my baby girl, I’m so sorry”. The cries I let out were something only heard when I mother loses her baby… something no one wants to hear. My husband cried, we both just cried. A day of true sadness, a day that I felt true heartbreak.

My journey was hard. We scheduled the termination on Monday 24th October. I remember going into hospital on the 22nd to take the tablet, the first step. I cried taking it, the night before I cried to my husband saying I couldn’t do it but he reminded me to as why we made the decision in the first place, which grounded me. Then Monday came, a day of sorrow. A day of many messages of “thinking of you today Ayesha”. It was like doomsday. It was like walking to my own death, tying my noose. But God I had no idea what I was going into…

It took 7 whole days to deliver my daughter. 12 midwives. 7 days in the labour ward within the bereavement suite. 7 days of pain and bleeding. They were the most gruelling days of my life… my husband was the only thing that made it bearable. He has a great sense of humour, so he made me laugh in our darkest times. That is a true gift.

The actual delivery was the hardest part. I remember after the first lot of pessaries failing, they told me that going for a vacuum delivery was not best. We wanted a post mortem, so they told me if she is vacuumed from me, (in the best way to describe it, as grim as it sounds) she will be mush and there will be nothing to send for the post mortem. I was given another painful choice. So, I decided I had to “suck it up” and go through more pain. The second lot of pessaries was hard and painful. I then had the hormone drip which gave me the most awful contractions. Even with morphine, pethidine, anti-sickness and gas and air, I was still in agony. At one point, after an anti-sickness medication I’ve never had before was injected into me, I ended up becoming unable to move and unable to speak. I was very aware of what I wanted to say, I just couldn’t. I remember trying to speak and the doctors shining a light into my eyes, repeating my name and tapping on my face lightly. In that moment I actually felt the best I’d felt that whole week. I was totally numb. I did eventually come around. Looking back I remember the utter calmness but fear that came over me. I’ll never forget that.

When it came to leave the hospital, I had to say goodbye to Hannah. This was incredibly hard. I didn’t want to leave her, I wanted to take her with me. I kissed her on the head and told her I was sorry and now she could be free. My world felt broken.

Afterwards, I bled clot after clot and then after becoming 3cm dilated, the consultant at the time said to me that she wanted me to deliver now. I was bleeding too much and if I wanted any chance of finding out what was wrong with my baby, I had to deliver now. The pushing was difficult. I remember her head getting stuck in my cervix as it was 14cm in diameter. The consultant put her hand between my cervix and womb to help me but the pain was just unbearable, I just screamed “I can’t do it, I can’t do it!” over and over again. I remember my husband saying, “I honestly think she’s had enough!” And then my body went into shock. I threw up and that is what helped deliver my baby in the end.

27 October 2022 at 18:23, my beautiful daughter, Hannah Rebecca, was born into this world sleeping. I was 18+2 weeks of gestation. I’ll never forget that moment of complete silence as she was born; the defeat my body felt as it let go of what it was so dearly trying to hold on to. A sense of calm was felt as pain left my body, and my husband told me how proud he was of me. I remember my midwife, wrapping her up so gently and asking if I wanted to hold her. I said yes, she was tiny. This tiny little baby in my hand. I checked her limbs, they were just like they had said, crooked and stiff (a sense of relief in some way as I kept having nightmares that she’d be born normal and that it was a mistake made). Pain didn’t take long to come back to me. One consultant tried to remove the placenta that had shattered inside me. Unfortunately, after a few attempts to remove it with equipment while I was awake, they were unsuccessful. With the pain building they said I needed to go to theatre to remove the placenta. They asked me if I want to be awake or asleep for the procedure. I didn’t even need to think about it and I just said “please put me to sleep, I’ve had enough now, I need to rest”.

Before going in, I told my husband that I loved him and asked him to tell Bethany that I loved her and that if I died, for him to tell her about me. I remember that moment. I really did feel like maybe my body wouldn’t survive. The pain was almost unbearable. In that moment, all I could think about was my beautiful baby girl at home, Bethany, and I felt a sense of guilt for doing this to her, for falling pregnant and failing. It was an awful feeling.

After my operation I recovered well. I remember the sadness I felt not seeing my bump and having nothing to show for it. I remember all the preparations we had to make, the blessing, the hand/footprints, the photographer to come and take pictures… I remembered what the reverend said to me when she came to bless Hannah. She said, “I just want to say, this isn’t your fault and what you decided was not bad, she is in the arms of God now”. Those words brought me so much comfort. I am not a very religious person, but after losing Hannah, I felt closer to a God in a way.

When it came to leave the hospital, I had to say goodbye to Hannah. This was incredibly hard. I didn’t want to leave her, I wanted to take her with me. I kissed her on the head and told her I was sorry and now she could be free. My world felt broken.

I was allowed to see Hannah on the Sunday before she went to the pathologists. I never knew that would be the very last time I held or saw her. I thought I’d see her in her coffin. I held and kissed her. I cried over her and I remember telling her that I hope she knew she was loved and wanted. I hoped she was free and that she knew mummy loves her. I remember giving her to the midwife and the midwife said to me “I’ll look after her”. Walking away from her just killed me. I felt so sad knowing she was going to be sent for a post mortem.

After 2 weeks, her post mortem was finished and she was returned to the funeral home. Unfortunately, I wouldn’t get the results for a further 12 weeks. I remember arranging her funeral. I never knew I could have a funeral until the hospital said something about having a service for her. I felt I had to, that I needed to acknowledge her life in some way. I remember the songs played at her funeral, including ‘Celine Dion- Fly’. I’ll never forget the music playing out through the chapel and hearing my family cry. We had a small service. My parents, my in-laws, and my Nana were there with my husband and I. Her coffin was tiny, it was placed next to a teddy bear. We carried her into the song of Eva Cassidy’s version of ‘Over the Rainbow’. I remember my father’s face when leaving. I placed 3 roses on the coffin, one from me, one from my husband and one from Bethany, and I kissed the coffin and said goodbye to my daughter one last time. I walked out with my head held high and on my own. My father hugged me after, he was in a state. I’ve never seen my father like that before, and I hope to never see him that sad again. It just made me realise just how Hannah touched everyone around me.

All I ever got told was how brave and strong I was being. I didn’t feel like I was. I felt I was waiting for a mental breakdown that never came. I kept saying that I would never let this break me.

My house was like a florist. I got flowers from people I went to school with over 10 years ago… everyone had heard the news and Hannah had touched more lives than I’d thought. Our new neighbour had brought a handmade bunny she made for Hannah; she cried when making it. All these lovely gestures from people really helped the sorrow I felt, knowing people were thinking of me and of Hannah. Getting her ashes back was sad. There seemed to be so many ashes and I just knew that most of it was probably her coffin due to her being so small. I had some of her ashes made into a necklace which I now wear with me wherever I go; I never take it off. It has the name ‘Hannah’ engraved on the back and when I die, I would like Bethany to wear it, and so on. I hope so that Hannah will live on the hearts of her family.

Weeks went by and on 6 January I found out I was pregnant again. Fear and excitement filled me, I was so excited to have a rainbow baby and thought that Hannah was sending me a blessing…

On 18 January, my consultant text me saying “Hannah’s post mortem report is complex and I’ll be getting an interim report by the end of this week. The report needs to be discussed at the MDT next week with geneticists”. My heart just sank… I remember him initially telling me that he truly believed what happened to Hannah was a one off and that sometimes this happens. I was now finding out it was actually genetic, and this might happen again. Fear overwhelmed my body and I just burst into tears. I can’t go through this again.

That night, I started to bleed. I had to go to A&E and was passing heavy clots. I was losing this baby too. I was 6 weeks and my world just felt dark again, this was my fault from getting so upset… I remember the doctors coming to review me and saying after an examination that “this is a threatened miscarriage, and we will scan you in 2 weeks’ time to see if you’ve miscarried”. 2 weeks!? I couldn’t wait that long. I prepared for the worse, I just knew I’d lost the baby.

The next day, I was then told I wouldn’t be getting an interim report sadly and that I’d have to wait at least another week for the meeting to be done and for the report to be finalised. I couldn’t believe my luck, I was meant to be returning to work in 2 weeks’ time and everything seemed to be happening again, the trauma was coming back in waves.

I finally got some news on the report the next week. It was confirmed arthrogryposis and that it looks to be genetic. So, my husband and I must go for further testing and will meet with the geneticist on 15 February. Then we can get an idea of recurrence risk.

On 30 January 2023, I went for my scan to see if I’d had a miscarriage. Sadly, it was a missed miscarriage. I was given two leaflets ‘Management of miscarriage: your options’ and another called ‘Why me?’ Those words saw right through me. I burst into tears. The sonogragher said “I’m so sorry’’. Two layers of grief. The loss of two babies in such a short space of time. The pain was just unbearable. That’s when I knew, I wasn’t ready to go through another pregnancy, not right now. I’d decided it was time to give myself a break. I’d opted for surgery. The baby was going to be sent for chromosomal/genetic testing to see if there was a link with Hannah’s pregnancy too. I also delayed going back to work for 2 weeks. I am incredibly grateful to have such an understanding workplace.

On the 1 February, after spending the whole day before waiting for an operation that got cancelled, I finally got to go to theatre to have my baby removed. Waving bye to my mother, that’s when it sunk in, just how utterly awful this experience has been for me. In a way, I found peace in myself, trusting that one day I’ll look back at this storm I’ve gone through and really feel in awe at how I handled the situation. My world felt very big, and I felt very small in it.

I asked the doctor before the surgery what would happen to the baby after testing. She said they will cremate the remains with other babies, and before cremation they will be blessed and buried peacefully. My mum cried when this was explained and so did I, it just felt too similar. I just kept thinking, why did this have to happen again? Albeit, not the same gestation and not the same circumstance but my god, the same love and pain I felt with Hannah. I’ll never forget that doctor, she was lovely.

The journey to theatre felt long but short too. I remember the anaesthetist, the obs and gynae doctor and the lovely anaesthetist nurse. All were so kind to me, so empathetic to my situation and I started to cry. The doctor held my hand and said “oh lovely, what a time you’ve had, I’m so sorry, you’re in safe hands with us now. I felt love from so many people around me which I’m ever so thankful for. The love I felt from people in those moments were not only a God send but saved my mental health from completely breaking down.

I remember feeling a quiet peace over me being put under. A sense I guess you’ll only feel being close with when you see life and death together. When your life carries on but another doesn’t.

After coming around, I only felt strength and courage to go on. I was surprised with myself. I still am, at how strong I am, how brave I truly am. I’ve never been this way before, but I’m proud of myself.

I still don’t know the full extent of what happened to Hannah yet, and I guess I may never actually find out. I don’t know what happened with my second pregnancy yet as I need further testing with genetics. But I wanted to share my story now because my story will never end. There will always be questions, there’s always going to be birthdays and anniversaries of my babies’ deaths. But what I do know, and what I guess I want you to know is, life really does go on.

You will feel numb, you will cry and my god you will be angry but what I want you to know is you will survive, my fellow bereaved parents. And one day, the courage, strength and love you found from the darkest depths of grief will send you on a journey, a journey to help others.

I hope my story has brought at least one person comfort, I hope it’s raised awareness of people who go through TFMR and baby loss. It’s a taboo subject. We all hope it’s never us but sometimes it can be us and when these things happen, we need people to lean on.

My story isn’t over, it never will be. Hannah lives on within me and so does my smallest baby and I really hope they both look down on me and think “wow, my mummy loves me, and she really is the bravest”… because I can honestly say, I became the best version of myself, because of Hannah, because of the baby I lost at 6 weeks after. I walked almost 50 miles in December to raise money and awareness for a stillbirth and neonatal death charity, I cut my long hair to donate it to a charity that makes wigs for poorly children, and I donated my wedding/prom dresses to a charity that makes beautiful christening gowns for stillbirths and children who have passed. And I know I’m not done, I never will be.

My babies live on in me and your baby in you. Make your baby proud. Live, be brave and never stop believing that one day, after the storm, your rainbow will come…