Written by Sam Manuel
June the 4th, a day that will never ever leave from our memories, a day that we wish and hope for no parent to ever have to face or go through, a day full of sadness and heartache and a day that most definitely was the hardest day of our lives… the day we made the heart-breaking decision to not continue on with our pregnancy… a subject so rarely talked about for fear of opinions or judgement… I never imagined myself ever being able to make such a decision… I am sharing our story in the hope that something positive can come from such a heart-breaking situation, even if it is to just help one family going through something similar. People just do not talk about these issues or situations for fear of what other people may think. It is still such a taboo subject, yet when a family are faced with such devastating news and making decisions in such short time frames there just isn’t enough information or support out there.
I too am guilty for judging, I would have never thought in a million years I would have ever even questioned or thought about making such a decision, to me a year ago that would just not have been questionable, I would not of ever considered ending a baby’s life, surely there would be a way of figuring things out, making things work, whatever the situation or circumstance I just couldn’t do that.
The day of our 20 week scan we sat in the same waiting area we had sat in for our two previous healthy pregnancies with all the other happy parents to be … we joked about which sex the baby might be placing our final bets… we were called in, we asked for them to tell us the sex…. then from that moment on the happiness left us like a light switch … the scan was going well, the vital organs and all the checks were being ticked off the list and everything was as it should be and then time went by and we still hadn’t been told the sex of our baby and more and more time was being spent focusing around our babies neck and face area and then the words every parent dreads to hear – ‘I’m sorry your baby appears to be showing something concerning’. We knew from his face, we knew from the room we were taken into (a small airy quiet room, with a bible on the window-sill, a box of tissues and a jug of water on the table), we knew that this was the room for ‘bad news’ … and from that very minute the nightmare began.
We were told that our baby was showing a growth/tumour/mass and that they they were unsure of its nature, around the neck/throat area … they told us they had seen this only once before. We were sent home in a blur of tears, confusion and heartbreak … before we left we asked to know the sex which seemed really unimportant now but we felt we needed to know for our boys at home, they were desperately excited to know.
We were taken back in and re-scanned …We were having a baby girl… everything I had ever dreamed of …that was the moment my husband, Daniel, broke down and cried…that most precious, special moment we longed to feel, the feeling our family was finally complete after waiting for such a long time was completely over shadowed by utter sadness and fear. I felt like we were living a nightmare and that I would wake up from it soon and be told we were having a healthy baby girl and be the happiest women on earth.
Sadly that was so, so far from reality…
We went home and had to face our boys and pretend everything was fine, it was not the special moment I envisioned. No gender reveal, no pictures to show them, just a pretend smile when inside I was devastated and heartbroken.
The next two weeks were full of appointments mainly at Southampton where we were given detailed scans to try and get a clearer picture of our baby’s condition but we were continued to be told bad news. Any hope we had was slowly getting taken away from us.
Consultants explained that our baby girl had a very rare condition (1 in 20,000). The mass was growing and would continue to grow on our baby’s neck and face throughout pregnancy. They explained the complex surgery our baby would need after birth to allow her to breathe on her own. At this stage they were very unclear if she would make term due to pressure on her heart pumping blood to the mass and explained the high risk at birth of her not being able to breathe alone.
They explained that our baby would need to be born at Southampton or possibly Great Ormond street hospital under a general Caesarean section and would need an EXIT procedure (a procedure where baby is born left attached to the placenta whilst they secure an airway by tracheostomy).
At every appointment they offered to discuss ‘options’ and of course we always declined to talk about that. We were absolutely not in a mind-set to give up or end our pregnancy no matter how frightening it all was. This was our baby girl we had waited and longed for so so long. She was here, wriggling about in my tummy, happy and healthy … apart from this awful mass growing around her neck and face.
At 22 weeks I began to feel emotionally exhausted, drained, numb and all round just awful. I’d cried myself to sleep every night since our 20 week scan, woke up every morning thinking about it. And I’m ashamed to say there were some days I wish it would just all go away and I could be happy again.
For me a massive turning point in my feelings towards our ‘options’ was the moment Southampton hospital did not give us the impression they could help us.
I am a mum already to two beautiful boys, they are my absolute world… they are both sensitive boys who don’t cope well with change and my oldest in particular worries a great deal. They are both ‘mummy’s boys’ and the thought of being away from them for long periods of time is heart wrenching. Southampton is not a million miles away and although not ideal it could possibly work with a lot of juggling but for our care to move to Great Ormond Street in London would be so far for what could be for an incredibly long amount of time. My boys need me as much as I need them and I just couldn’t be away from them for that long or for that distance.
I took to Google for as much information as I could find and found there was very little information on cervical tumours in the UK (which at this stage is what they were calling our babies condition). Most information I found were cases in America, and I quickly realised an operation once baby was born would not be a quick fix and that these masses can interfere with thyroid glands, speech, hearing, eyesight, feeding and of course breathing. There were cases of children on breathing ventilators and feeding tubes for the first two years of their lives and in hospital for many, many months after birth. That all being the best outcomes, I also read cases where babies survived birth but died several hours or days later due to breathing difficulties and some where the masses were inoperable and continued to grow on their children’s faces and necks many years later.
I knew I needed to have the discussion with Daniel about how I felt and my worries. We were already a family and we needed to do what was right for our whole family.
We also could not help but think about what kind of life our baby may have and the challenges she would have to face all at a stage where she would be at her most vulnerable and small.
We agreed we needed to have an MRI scan as it had been booked already and we needed to hear as much information as possible before making this absolutely devastating decision. We had around a week before our MRI scan and I had read that terminations in pregnancy had to be done before 24 weeks. I was fast approaching 23 weeks and new time was not on our side. I made the decision to ring Poole Maternity Hospital to discuss ‘options’ as I had no idea about what our ‘options’ even were as I hadn’t done this before.
I was asked to come down to the hospital for a chat and that was when the reality of a ‘termination’ really hit home. I was very naive as to the process of what actually happens and I think initially I thought I could be given a tablet, be put to sleep, have an operation to remove baby and wake up not really aware of what had happened and begin to rebuild our lives somehow. This was obviously not the case. I was told past 22 weeks I would be given drugs to induce early labour, and then would give birth naturally… and as if that wouldn’t be horrific enough I would also have to consent to giving our baby feticide. (This for anyone who does not know is an injection given to baby 2 days before you give birth. It is an injection through your abdomen and into the baby’s heart to stop baby’s heartbeat and to ensure baby is not delivered alive). The later in pregnancy the higher the risk baby may be born with a heartbeat and breathing.
I left this appointment feeling terrified. Did I actually just have that conversation and was I actually considering this? When we returned to discuss the results of the MRI we were told yet more bad news. The ENT Consultant explained that the images had shown clearer views of the mass affecting an even larger area then seen before – the left and right side of the throat, chin up to the lower lip, and up to the right eye/ ear but he could not confirm if the mass was effecting the tongue/mouth or what it would be effecting in the throat area.
He also told us he could not confirm if the mass was benign or anything more sinister and could not name what infact the mass even was at this stage. He explained how complex the mass was and how our baby would need multiple complex surgeries that may span across months/years. There were large blood supplies to certain areas that posed huge risks during surgery, as well as nerves being affected also.
We were told again the risks we may face before she is born and after she is born. That she could come early due to polydramios (a condition where if the airway becomes blocked by the mass and she cannot swallow the amniotic fluid a bubble will start to appear in baby’s stomach which could send me into early labour or worse she may not make it at all.
After the consultants left we chatted to a senior midwife about pros and cons with all the odds seemingly to against us and although in our heads we knew the right decision to make saying it out loud and not listening to our hearts was extremely hard. She didn’t want us to make a decision there and then and told us to go home and think about it over the weekend and to call on Monday with our decision.
Monday came and we had made our decision – we were not going to continue with the pregnancy. I seriously underestimated how hard a phone call that would be to make … saying the words out loud the words I never thought I could say or would ever have to say was absolutely devastating.
We were quickly booked into Southampton with the consultant we had previously seen to have the feticide procedure. The day before the procedure I took lots of photos of my bump and videos of her wiggling in my belly, (memories I will treasure forever) …I remember filming my bump and having awful thoughts wishing she would stop kicking and peacefully go off to an eternal sleep naturally, so I didn’t have to make this horrendous decision.
Words cannot express to anybody how utterly horrific this procedure was. I will never ever forget it and struggle to even think or talk about it without crying. I am so so sorry for anybody who has to make this decision and my heart goes out to you! There is nothing that can make this procedure easy it is the worst thing I have ever and will ever experience in my life.
We were taken into a room where we waited to sign consent forms. Consent forms to end our baby’s life. We were talked through the procedure and then taken into the room I was originally scanned in.
I had to lay down on the bed the opposite end to how you would usually lay to be scanned so you cannot see the screen. Daniel was sat by my head holding my hand….. the consultant scanned my bump to see baby’s position and marked my belly… they gave me a local anaesthetic and then freeze sprayed my stomach…. they then told me to take deep breaths and wiggle my toes to help focus my thoughts on something… she then injected the feticide using a really long needle through my stomach and into my baby’s heart….it didn’t hurt but I cried so hard it hurt my throat and I could feel that the pillow I was led on was wet with tears and I could hear Daniel crying behind me.
For me now, this is the moment that will haunt me until I die … I had felt my baby girl wriggling in my tummy seconds before that injection, the injection I had consented to, and signed for to end my baby’s life … for anyone reading this who thinks how did she do this? How could she do that to her baby? Rest assured I will live with that guilt for the rest of my life I will forever be at war with that moment in my mind and thoughts. Once again for anyone who has gone through this or is going through this … nothing will take the pain away, nothing will make that procedure any nicer to bear. It is, without a doubt, just heart-breaking.
I then had to lay there on the bed holding Daniel’s hand, crying together whilst the consultant wrote up the procedure on her computer. We had to wait for up to 5 minutes before she could rescan me and confirm there was now no longer a heartbeat. She confirmed baby’s heart had stopped and told me I was really brave (I looked at her and just thought” how on earth do you do your job?!?!”). We were taken into a side room where the consultant left us to talk with the midwife. We sat in that room crying and talking for some time. I felt a strange feeling of relief that it was over with and I thought to myself nothing now could make me feel any worse.
I was given a tablet there and then to stop the pregnancy hormones in preparation for giving birth in two days at Poole. We left Southampton Hospital and agreed we never wanted to go back there again. I felt completely numb leaving the hospital and I don’t think it registered that I would be giving birth in 2 days.
Packing a hospital bag knowing you are not coming home with a baby is far from easy. The reality started to sink in the day before. I started to worry as I had had two previous caesarean sections with the boys and had never birthed naturally. I just hoped and prayed that I would have an easy and quick labour with no complications and then finally I would be able to hold my baby and enjoy the precious moments we would have with her.
The following day we arrived at the SPRING suite where we were greeted by a lovely bereavement midwife and was talked through the process. I was induced and shortly after my labour began. At 10.01pm our beautiful, tiny and precious baby girl – Mila Rose was born.
During labour there were moments I completely forgot that my baby was not going to be born alive. I wanted to give birth so much due to the pain that when she was born I still expected to hear that cry. The midwife wrapped Mila in a blanket and passed her to me, I felt so unbelievably numb, I didn’t cry at first I think I was overwhelmed. I told Daniel to hold her and I could hear him crying as he gave her a cuddle. I felt so guilty that I hadn’t cried. I think I was relived it was all over and that there weren’t any further complications. I hadn’t managed to actually give birth before and had always felt sad with the boys that I hadn’t experienced it.
Our midwife took lots of photos for us, handprints and footprints and bought Mila back into us washed, dressed and snuggled in a small Moses basket with the blanket and bunny we bought with us for her. She explained she was lying on a cool mattress that could be plugged in so she could stay with us all night. She was placed by the side of my bed. I checked in on her throughout the night looking at her tiny hands and fingers. She was so fragile. I barely slept at all that night but I am so so grateful I had these special moments with Mila in my own time as when she was first born I felt really disconnected and overwhelmed.
The SPRING team were just amazing and I cannot imagine having to experience our situation without them, they were so supportive, kind and helpful. They gave guidance on funeral arrangements, post mortem testing, counselling and arranged for a blessing for Mila by the chaplain. They stressed we could stay for as long as we needed and we did not need to rush to leave.
As the day went on, I started to feel more and more emotional at the thought of having to leave her and say our final goodbyes. I wanted to stare at her little face forever but we knew by staying another night would only make it harder and prolong the inevitable. I felt a pain in my heart as we gave her one last kiss and handed her over to the midwife. She assured us she would be well looked after throughout the whole process and I truly believed every word she said. She gave us a hug and we left crying with empty arms and broken hearts.
The next few days I felt complete sadness. I underestimated how hard those days would be… I had wanted the whole process to be over with and to begin rebuilding our lives but hadn’t really thought about how hard coping with the reality would really be.
I wanted my boys with me for distraction and didn’t really want to accept help from our family and friends when they offered it but I soon found myself not allowing myself to cry or show emotion in front of the boys and felt I had to stay strong. I wasn’t allowing myself to grieve.
Before we left the hospital for the final time we had discussed options for a post mortem. We agreed we thought it would be the best decision for a full post mortem. We hoped it would give us a clearer insight into what tumour our baby girl had and hoped to understand it all better. We also wanted to know if it could affect future pregnancies and hoped it would give us some peace of mind that we had made the right decision.
When Mila was born you could clearly see a mass was growing around her neck area and it had started to distort the right hand side of her face. The midwife dressed her in a little pink dress and hat and positioned her onto her right hand side in her Moses basket. For me I don’t have memories of an awful mass on her face but just a beautiful baby girl sleeping soundly which at times makes it harder and I have to remind myself all the reasons we came to this heart wrenching decision.
I kept copies of all my hospital notes for that reason, so that when I need reminding I can read them and hopefully gain some comfort in knowing we made the right decision. I received calls and texts every other day from the bereavement midwives who were checking in on us and we cannot thank them all for their help and support.
They also would call with updates if Mila had been moved at all. I found these calls really hard but also reassuring as I wanted to know where she was and that she was being well looked after.
The day of Mila’s funeral I felt quite strong. I felt that I couldn’t possibly cry anymore and I thought I would be ok but when the car arrived and they handed Daniel her tiny white casket I wanted to crumble to the floor. The music began to play and we walked side by side as Daniel carried her down the aisle both desperately trying not to fall apart. We placed two pink roses on her casket along with her pink bunny. The service was beautiful and I hope we gave her the send off she deserved.
17 weeks on, we were called back for the post mortem results, it was an agonising wait but we were told everything we had hoped for. The tumour was benign, it wasn’t genetic, it wasn’t anything I had or hadn’t done, it was an extremely rare condition that could not have been prevented and would highly likely never happen again. We were reassured by the consultant that we had made the right decision.
It was such a relief to hear those words but naturally there are times I do doubt my decision and battle with heaps of guilt. I struggle to sleep at night and still can’t believe everything we have been through. As time goes by people around you naturally start to forget the ordeal that you’ve been through, when they don’t see you crying constantly they think you’re ok but I don’t think I will be ok for a very long time. We decided to have some of Mila’s ashes made into glass necklace and ring so we can carry her with us every day.
I hope for anyone who is going through or has gone through a similar situation they take a little bit of comfort from my story. You will never fully get over a loss but with support and time you learn to cope with it. And for anyone reading with judgement I hope you can understand how heart breaking it is for any parent to have to make such an awful decision, a decision that will never go away.
Mila Rose, you too carry a piece of mummy’s heart with you … Thank-you for teaching me strength I never knew existed, you will forever be in my heart baby girl xxxx