Myles’ Story

2023 my husband and I decided we wanted another baby. 

We already had 3. 

Our daughter was 17 at the time and our twin boys were 12. We thought we were done having 3 but I had that niggling feeling that most women will probably know and after a lot of talking with my husband and health practitioners we decided to go again.

I had my coil removed and I fell pregnant the month after. We were so excited 

After our 12 week scan we told the family and friends who were all very shocked but equally excited. We went on a family holiday with my sister and her family to Scotland, all with a spring in our step knowing we would be welcoming a new addition to our family in the new year. 

A few weeks later we had a 20 week anomaly scan and this is were our world crumbled around us.

We didn’t want to find out the sex, just to know baby was growing well and where it should be for 20weeks was good enough for us. 

Initially all looked good and baby’s heart was beating away nicely, it was hard to see the baby on the screen but I just though maybe I remember the scans being clearer all those years ago than what they actually are.

The Sonographer was very quiet and said she was struggling to get certain measurements of baby’s tummy. She asked if I had been leaking any fluid, to which I said no. 

Very quickly she said she was referring us to John Radcliffe hospital ( our nearest Fetal medicine unit) as they will have the correct equipment to get the measurements we need. While handing me back my maternity notes she said : ‘I hope they can help this baby’ and I had that dreaded gut feeling.

We left the hospital abit bewildered as nothing had been explained other than my amniotic fluid was low and my placenta was on the low side.

Sure enough Oxford called that evening with an appt for the following day. Before the call ended the midwife said: please try and get some sleep. Again I had that feeling come over me. I chose not to Google anything and keep as positive as I can until told otherwise. 

Anxiety crept in though and I made a couple of frantic calls to my midwife to ask what could be wrong and she didn’t say anything other than let’s see what Oxford find. 

We arrived at Oxford and were called in pretty much straight away and scanned. It was two ladies scanning me and lots of questions asked which I can’t remember now what those were. They were scanning me for so long and not a word said untill my husband asked what was going on. 

With that they called a consultant in and she rubbed my leg as she walked in , once again that impending doom feeling washed over me. 

Her and the two other ladies took themselves off into the next room and within about 30 seconds called us through. 

I sat down with my husband opposite her and she pulled herself close to me with her hands on my knees and said a sentence I will never ever forget: ‘ your baby has a life limiting condition that is incompatible with life called Bilateral Renal Agenesis, I’m so sorry’.

I can’t remember too much from here onwards of what was said. I asked her if I would have to give birth to this baby to which she replied Yes.

The coming days were filled with so much heartbreak sadness and trauma. Having to tell our 3 children broke my heart and to see my husband try and be strong for us all. 

I was sent away to decide whether I wanted to have a feticide and go through labour and delivery or to have a TFMR procedure.

This decision wasn’t made lightly, lots of backwards and forwards but ultimately decided to have a TFMR. 

To my disgust I had to arrange this myself. I had to arrange the birth of my poorly baby knowing he would be born sleeping. And what’s worse is that nowhere in our area had space for us, no hospital would take us and so we had to travel 2 hours away to a termination clinic.

I was sat amongst other women who were there because they didn’t want their babies (conversations were heard to strongly suggest this) and our baby was so wanted. 

Sadly by this point I had began to detach myself from this baby. I couldn’t even look at myself in the mirror or take a shower without feeling distraught., I couldn’t touch my bump or bare to feel him moving anymore.

It was torture. It was cruel. 

I would stay awake as late as possible to avoid laying in bed and feeling him wriggle about. 

When we arrived we were taken in to see numerous different nurses, none of which were sympathetic, and I was placed back In the waiting room.

Eventually I was called in to take some medication that would end our pregnancy. And to have dilators inserted into my cervix to induce labour and soften the cervix for delivery.  

That night I was very uncomfortable with strong cramps (similar to early labour pains) 

The following morning I was taken down to theatre.

My whole body was shaking uncontrollably nothing would stop it. I now know this was anxiety riddling my whole body. I had a lovely man who asked me to confirm my details and he told me how sorry he was I was there. I began to cry because this was the first bit of sympathy I was shown since being there. 

As I was wheeled in, my husband was able to give me kiss and told me he loved me all with tears and heartbreak in his eyes. He was sent outside to wait for me.

I was being put to sleep as I couldnt cope with seeing our baby. 

Everybody in theatre was briefed on my circumstances and I remember feeling so sad hearing it all being laid out to them. I couldn’t believe this was me they were talking about. 

As they administered the anaesthetic I had 2 lovely theatre nurses who held my hand and wiped my tears as I slowly fell to sleep. 

When I came round in recovery my hands were on my tummy, I believe one of those lovely nurses placed them there for when I woke up. 

Before being discharged I had a meeting with a nurse to go through what to expect. 

As this came to an end I asked her if they could tell me to sex and if they managed to get any footprints. 

She flicked through my notes heartlessly and said: ‘Boy’

And then slid his footprints across the table to me. 

I tucked them in my hand and we walked out.

My husband and I had a moment in the car before we left and looked at them and cried. 

My recovery was physically quick. My milk coming in was just another blow and stark reminder of what I didn’t have but by that point I was mentally and physically numb. 

The coming weeks just got worse with having to organise his funeral and we wanted to name him.

We called him Myles 👼

Out of all the professionals we have spoken to and dealt with, the funeral directors were the loveliest of the lot. 

I kept putting off speaking to them about what we wanted in regards to the funeral service and not once did they rush us or put any pressure on us.

They organised such a beautiful service for Myles with his name on the screen in the crematorium and beautiful knotted blanket for his coffin to be placed on. 

My daughter and I made a brightly coloured bouquet for him to be placed on his coffin.

They played a song we chose while we sat there with him and when the song ended we stood up, kissed his coffin and said our goodbyes. Walking away from him there was one of the hardest things I’ve ever done. 

I’ve learnt a lot about myself since losing Myles’ and I thank him for that. He has changed me, in my opinion for the better but I’m sure others would disagree. I’m a much stronger person, even more fiercely protective of those I love and I use my voice, something I’ve not really done before. 

Another thing I’ve learnt is that there is very little care when you are in this horrendous situation.

Not from the medical profession nor from the psychological professions. 

No one really talks about miscarriages, still births, TFMR’s but now I’ve found my voice I will use it to raise awareness and fundraise for Renal Agenesis UK.