Osian’s story

In June 2021 when I found out I was pregnant again, I honestly could not believe my luck. I had three living children and this baby was to be our fourth and final child. I’d had a difficult journey to motherhood, as it took us seven years to fall pregnant naturally with our eldest. In those years we had endured unsuccessful IVF treatment and early miscarriage. Our children are all miracles as we were told we would never achieve a pregnancy naturally.  So to be pregnant again in my late thirties just seemed like the biggest blessing.  

I was very anxious during the pregnancy, so we paid for an early scan at 9 weeks. Everything was perfect. Then came our 12 week dating scan and again everything was said to be perfect. I was very keen to find out if we were having a girl or a boy, so at 16 weeks we paid for a gender scan. We found out we were having a boy, and everyone was absolutely thrilled. We would have two girls and two boys, which was just wonderful. At 16 weeks I had the quadruple blood test, which tested the risk factor for trisomy 21 and this came back as low risk. During the 12 week scan they were not able to take the nuchal fold measurement due to his positioning, so I did not have the combined screening done to see the risk factors for trisomy 13, 18, and 21.

When it came time for the 20 week anomaly scan, again everything looked great. Except, the sonographer was struggling to see the heart properly, so a follow up scan was arranged for 22 weeks. I was assured that nothing was wrong. The same thing happened at the follow up scan. The heart looked slightly bigger on one side, but the sonographer wasn’t sure if it was just a positional thing. I was assured again and again that there didn’t appear to be anything seriously wrong, but I would be referred to fetal medicine for an in depth scan with a paediatric cardiologist.

We attended our first scan at the specialist centre at a much bigger hospital quite far away from where we lived. The cardiologist noted some thickening of the heart but couldn’t find anything very concerning. He decided to book us in for a more general check with the fetal medicine department and repeat the heart scan in four weeks’ time. A week or two later we were seen by the fetal medicine consultant and a general check was done, including an ultrasound. In this ultrasound, it was noted that there were some abnormalities in our baby’s brain. Some cysts and a wide cavum. An MRI scan was arranged, further blood tests, further scans, and further appointments in the department. In November and December 2021 we were back and forth for scans all the time, it felt. I was petrified of having an MRI scan because I am claustrophobic, so it did take me a while to build up the courage to accept the appointment.  

We were constantly told that the heart and brain problems were of ‘unknown significance’ and nobody thought that there would be anything seriously wrong – at least, we weren’t told there would be.  

One day, a week or so before the MRI scan, the consultant from fetal medicine rang me to suggest we consider an amniocentesis just to check for any genetic problems. But it was entirely my choice, just something to rule out so that we would have checked absolutely everything before the baby was born. I thought about it for a few days before agreeing as I wanted to make sure we had all the information we needed so that when the baby was born help would be ready. The amniocentesis was planned for early January at 32 weeks, because if the procedure brought on labour, the baby would be ok at that gestation.  

In the middle of the constant medical appointments, we were busy moving house. So it was chaos all round. We had to travel even further for the MRI scan, which took place right before Christmas. I don’t know how I got through it but I did. I suppose when you know you are doing something for your baby, you push yourself to do it for them.  

Christmas and the new year was a reprieve from hospitals and tests and scans. But constant fear was hanging over us and it was hard to switch off from it. At the start of January, as a family we went away for the week to celebrate my husband’s birthday. During this holiday I still had phone calls to take and a video call from a specialist consultant who had reviewed the MRI results. Again, it was the same information – there’s something not quite right but the significance is unknown. Over the course of this holiday, it felt like the amniotic fluid had considerably increased and I lost the feeling in the top of my right leg.  

A day after returning from our trip away, I was back at the hospital over the weekend, having my steroid injections done (to mature the baby’s lungs in case the amniocentesis caused me to go into labour). I was 32 weeks pregnant now, so was having the amniocentesis done a couple of days later, on a Tuesday. The procedure wasn’t painful but it was uncomfortable. I had a lot of fluid, so there were no risks of accidentally harming the baby, I was told. He slept through the whole thing. Due to the excess fluid, it was decided that he would have a feeding tube when born, and checks would be done to make sure there was no obstruction that would stop him from swallowing, or any stomach issues. He would have a heart scan on the next working day and eventually an MRI to check his brain. 

As we were leaving the review with the consultant, he said to us – we will get the initial results from the amnio in three days. That will be for trisomy 13, 18 and 21 – but I don’t expect it’ll be any of those.

So we left the appointment, feeling relieved that all the tests were done, and somewhat calmer because now we just had to wait for him to be born. We weren’t worried about the amniocentesis results at all. Of course, I went home and googled all the trisomies and chromosomal issues so that I knew more, but I didn’t think our baby would have any of these issues.

The excess amniotic fluid was making my life quite difficult, I was in a lot of pain – couldn’t sleep, or sit or stand without pain. But I kept telling myself it would be ok.

Friday came and I knew that day would bring a phone call with the initial results. My phone rang ten minutes before I was due to leave for the afternoon school run. It was the 14th of January.

And that’s when our world crashed into uncountable pieces.

‘It’s not good news, I’m afraid. The amnio is positive for trisomy 18, Edwards’ Syndrome. He won’t survive. We need you to come in to discuss options.’

‘I have to go,’ I said. ‘I’ll call you back,’ I said.

I wailed with a cry so loud and uncontrollable. My two year old daughter ran in and cuddled me. I had to get my husband to leave his meeting (he was working from home and taking part in a zoom call). And I had to tell him – our baby is going to die.  

How we eventually got in the car and drove to the school, I don’t know. Because the shock and devastation was so deep and all encompassing. We told our other children later that day, and we all sobbed together.  

I was now 33 weeks pregnant and we had agreed to go back to fetal medicine for a scan and to speak to the consultant on Tuesday of the next week. He told us that we had two options – a termination or to continue with the pregnancy. We chose to continue. We wanted him to have a chance to live. Appointments were arranged with paediatric palliative and paediatric doctors and midwives at our local hospital.

There were 13 days between receiving the diagnosis over the phone and my water breaking. How we got through those days I will never know. But we had appointments at local hospital – a c-section was planned (my previous births had all been c-sections, so this birth was always going to be a c-section) for valentine’s day, and midwives were checking on me. We had a private 4D scan during this time as well, as we were trying to do all we could to enjoy our remaining time with our baby.  

The day before our baby boy was born, we had an appointment with the paediatric palliative care consultant, the paediatric consultant and the head midwife at our local hospital. During this appointment we were asked what our wishes were for the birth and what we wanted to do. It was agreed that if he was born alive, oxygen would be appropriate, but we didn’t want to do anything to cause him pain if it was apparent he was not going to survive. Our plan largely was that we would see how he was at birth and potentially change the plan to suit, because on paper there just didn’t seem to be much wrong. We trusted the doctors’ opinions.  

We went home, had a normal day, and then as usual, I was unable to sleep or lie down, so I went downstairs in the early hours of the the 27th of January 2022 to try and sleep sitting up on the sofa. As dawn approached, I was pretty sure my waters had broken as there was fluid through my clothes, but as it wasn’t a massive amount (and I knew I had a lot of fluid) so I was sort of in denial about it. The midwife was due to see me that morning, so when she rang me to check I was in, I told her I thought my waters had gone. She arranged for me to go into hospital to be checked. I called my husband to come home from work, and arranged for my mum to come to the house to be with the children, as I wasn’t able to get them to school. I was in pain, fluid was leaking but I was still hoping that it wasn’t my waters because I knew he would be born today if so, and I just wasn’t ready or prepared for this to happen so soon. I was only just 35 weeks (35 weeks exactly by my dates, 34 weeks and 5 days from the date given at the dating scan) and I was hoping that he would be at least 37 weeks before he was born.

When we got to the hospital we were taken immediately into a private room and were seen straight away. The consultant did swabs to test the fluid and to check if labour had begun. Both were positive. My waters were leaking and labour had started. We were taken for a quick scan, I think largely to check that the baby was alive, as I had so much fluid that it was really difficult to monitor him. He was alive, his heart was beating and he was head down, engaged and ready to be born.

The surgery was happening an hour or so later. We were preparing and going through everything. They were worried about placental abruption. I genuinely thought that I would die as well as my baby. It’s the strangest feeling to be present in a room and see everything going on around you and being spoken to, but feeling like you’re not really there because surely this all cannot be happening? This cannot be real.

Going in for the surgery was like a weird dream. I remember lying down after having that the spinal and someone saying to me, ‘Oh, Elizabeth, your heart is racing.’  

The surgery started, the quietest operating theatre I had experienced. I suffer from low blood pressure and sickness during c-sections, but the anaesthetist was really on the ball and saved me from experiencing those.  

We discovered that my hind waters had gone, so the fluid had been trickling down from the top. Now they needed to break the waters at the bottom. The noise of the waters being broken and gushing out was like something I’ve never heard before. They told me that six litres of amniotic fluid was drained. And that didn’t include the fluid I had already lost.  

At 16:09, my precious Osian Joseph was born. Silently.  

He was given oxygen by the paediatric palliative care consultant we had met the previous day. He made a small cry after the oxygen. The consultant checked him over before giving him to my husband to hold. And then he was given to me, placed on my chest, with our faces touching. It peaceful. It was calm. Time has no meaning when you’re in a situation like this and I couldn’t have told you if it was five minute or five hours. He was breathing, his heart was beating and I really thought he might live. He opened his eyes for a while, while I was holding him. My husband and I took turns to hold him, with intermittent checks by the consultant. He was then placed on my chest for the final time, where I gazed at his perfect little face, his eyes now closed, and I stroked his face and told him over and over that we loved him. I thought of him as ‘the boy who lived’ in my head because part of me thought he was going to be fine now, he was going to live.  

He died on my chest, being held and being loved. He was the boy who lived. The boy who lived for 53 minutes.  

The consultant told me that he felt no pain, only love. And I believed her.  

We were taken to recovery, where Osian was dressed in clothes we had brought for him. He weighed 3 lb 10 oz, so even the smallest clothes we had were a little too big. A cuddle cot was brought to us so that we could spend time with him. Later that night we were taken

to the special room which exists solely for occasions such as this. It is decorated with butterflies and is entirely private. We spent 24 hours with Osian. The midwives and play specialists helped us cut a lock of his hair, have hand and foot prints done and casts of his hands. The memory box we were given really guided our memory making as we had no idea what we should do – we were in the deepest shock imaginable. The chaplain came to see us and we had a blessing for Osian. That meant a lot to us.  

We took a lot of photos, both in the operating theatre and afterwards. We had also bought a teddy bear for Osian, and bought a second one so that one could stay with him and one we could keep.  

When it was time to leave, and we were getting him ready to go into the moses basket to go to the mortuary, it felt like he was dying all over again. I wasn’t morbid spending time with his body. It was calm and peaceful. I never wanted to let him go. But you find the strength from somewhere inside to let him go, because you have no other choice.

We were home that night, without Osian. I had to recover from the surgery, without Osian.  

I will never truly have the words to explain just how traumatic, devastating, upsetting, sad, terrible and breaking the whole thing was. No one should ever lose a child. It goes against the natural order of everything. Losing Osian has changed our lives so completely, we are not the same people we once were. We will grieve him as long we live, because we will love him forever. Grief and love are two sides of the same coin. When I say the world shattered into uncountable pieces, I mean it. We have done all we can to reassemble, piece by piece, but our world will never look the way it did. There will be a piece missing from us, always.  

About a week later, we had to register Osian’s birth and death. I never thought I would have a death certificate for my own child. After another week, we had Osian’s funeral. It was a private funeral and burial, presided by the chaplain from the hospital. We had a short service at the funeral home, followed by a service at the graveside, and watched as the small coffin was placed into the ground, covered with an arrangement of white and blue flowers.

After the funeral, it seemed like life had to get back to some sort of normality. But I don’t honestly think it’ll ever feel entirely normal again.

In the weeks after the funeral, the consultant from fetal medicine rang me again to say that they’d now had the full results of the amniocentesis back. Osian had Edwards’ Syndrome but he also had an unbalanced translocation of chromosome 3 and 21. So my darling boy, had two chromosomal problems. But to me, he will never be anything other than perfect.

At the time of writing it has been 13 months since Osian’s birth and death. Shock carried us through the weeks and months after. We have found our own ways of keeping Osian’s memory alive in all we do. We talk about him every day. The children talk about their baby brother in heaven, and we speak about how much we all miss him. The first Christmas was a particularly difficult time, especially as Osian’s first birthday was only a month after. We had a family party for his birthday and we found special ways to honour and remember him. I decorated a tree in our garden (which we planted for Osian) with seeded paper, in the shape of hearts, with Osian’s name and names of other babies that have also gone too soon. I have since planted the seeded paper in our garden, so that the flowers will bloom for all the much missed babies.

I have been very lucky to have ongoing counselling and it has been so beneficial to me. We have also worked with a play specialist to help the children process Osian’s death and to make memories. We feel fortunate to have been able to receive such great care and help. We are so grateful to everyone.

I also started writing poems a few days after Osian’s death, and I have continued to this day. I share a lot of these poems on my instragram account (@stars.and.leaves) and a selection of my poetry has been published (the book is called Waves of Stardust). Being able to write has been an incredible release for me. 

Osian will always be the missing part of our family. We will love him for eternity and we will miss him for as long as we live. His life and his death have changed us forever. We will never stop talking about him and honouring his short life. Because Osian is important and he matters.

My Baby

My sweet little baby

Sure as the sun rises

And the sea swells

My life will be for you

Your beautiful face

So still, so real

From memory arises

Like petals, from flowers’ bloom

Your soul, your all

You gave to us

Picked us from a rising tide

To be yours

In my heart, in my words

You will always live

Candlelit and fire warm

Your light transforms

By Elizabeth Lockwood From Waves of Stardust