Rowan’s story

My pregnancy with Rowan was all pretty normal up until my third trimester. I naively thought that once past the 28week mark, you are in the safe zone.

At my 32week scan, the sonographer said that Rowan’s kidneys looked bright and she referred me to the consultant. She reassured me it was probably nothing to worry about, but best to get it checked. Back in the waiting room I messaged my partner Rob to say what was going on, but that it was probably nothing to worry about.

In the next scan, the consultant asked if I thought my waters had gone at all: I didn’t. He examined me and confirmed they hadn’t. I’ll never forget him saying the words, “There’s no fluid around your baby.” I remember replying, “Okay so what does that mean?” He told me to take a seat and asked if I had anyone with me today. I realised this wasn’t going to be good news.

He explained Rowan’s kidneys were both full of cysts (bilateral polycystic kidney disease) and that he couldn’t see his bladder. He said that the biggest issue wasn’t his kidneys, it was that without the fluid his lungs couldn’t develop properly and we wouldn’t know how developed they were until he was born. When he looked back at my 28week scan, he couldn’t see fluid around Rowan even though it was recorded as normal. He said the time the fluid disappeared would determine how developed his lungs were and that you can’t see the lungs on a scan. I’ll never forget him telling me that some families choose not to continue the pregnancy. 

I made an appointment for the next day for Rob to attend with me to discuss things further. We went to the appointment together and the consultant repeated what he had told me. I remember him saying, “As much as the baby doctors try, they might not be able to save him.” We asked what they could do for his kidneys in the unlikely chance that his lungs were ok and were told it would generally be dialysis and then kidney transplant and that would be at a different hospital. Just a slither of hope was all we needed to continue the pregnancy. We made another appointment for two weeks’ time to meet with the pediatric consultant. We were both signed off work.

We scheduled a CVS (biopsy of the placenta) for a few days’ time to see if there were any chromosomal or genetic abnormalities. It sounded horrendous but it wasn’t that bad thankfully.

Then we had to wait two weeks. It felt like such a long time. The first few days every time Rowan kicked it would make me cry, as would looking at the scan pictures. We’d been reading books to our son Archie about being a big brother and whenever he touched my tummy or mentioned Rowan, it made me cry. We tried to go for ‘nice’ family days out to keep busy but it all just felt a bit wrong. 

I remember being worried we’d lose Rowan but equally worried about how we’d look after Archie if he survived and we were in a different hospital. I was worried that Rowan would suffer. I was worried Archie’s world would be turned upside down and he’d suffer. I was worried if Rowan survived a little while, we’d have a bigger attachment and then he’d die. I was worrying about every possible scenario. Equally I still had hope; what if he survived the next two years on dialysis, had a transplant and was fine? We had to take that chance, even if it meant a difficult couple of years. I couldn’t find any stories the same as ours.

Those two weeks were so hard, the uncertainty meant my thoughts were spiralling. I remember someone asking what Rowan’s quality of life would be if he did survive. I honestly didn’t know but I knew I didn’t want him to suffer. It made me question if we were doing the right thing.

I packed Rowan’s hospital bag in those two weeks. I remember sitting with our newborn box of clothes from Archie. I’d bought a first outfit for Rowan after our gender scan so knew I’d pack that, but I didn’t know whether to pack much else. I remember feeling quite strong to start with but then had the realisation Rowan was very unlikely to need a coming home outfit as he probably wouldn’t ever come home. It was such a painful realisation. I decided that if he were to ever come home, I would buy him a special outfit then. 

The two weeks passed and we were back in the fetal medicine department. The scan unsurprisingly still showed no fluid. We met with the pediatric consultant and she explained that she had never seen a case like ours where the baby had survived. It was a very difficult thing to hear, and I think that was the moment our hope disappeared.

I asked what the birth would be like, would he be stillborn? She explained that some babies don’t survive the birth, others are born and survive a little while. She offered to make a referral to the children’s hospice for us, as they could provide a room for us to spend more time with Rowan after he was born. She also explained they could provide that at the hospital, it would just be if we wanted longer with him the hospice could be better. It felt so strange talking about it. This was not how I’d pictured my birth at all. I asked if he would suffer, they said he wouldn’t and it would be very peaceful. I commented that I wasn’t sure if we were just prolonging the inevitable and the midwife explained the alternative. She said what we were doing was simply letting nature take its course. That felt right to me: we would let nature take its course.

We started grieving from the moment we found out about Rowan’s kidneys. We decided we’d put most of what we had for Rowan away. I bought some baby loss books and started reading them. I read other people’s stories online and joined baby loss groups. We were no longer preparing to bring our baby home; we were preparing for his death. 

Our CVS results came back clear and we’re still awaiting the full gene panel results, though as neither of us have any family history of kidney problems, the consultant thinks it’s probably just a case of bad luck.

It all made me view everyone in the antenatal clinic waiting room differently. I didn’t know their stories. How was I to know if these women had also lost a baby? Maybe they were having the rainbow baby they’d dreamt of; maybe they’d been trying to conceive for years; maybe they’d still lose their baby. I hoped not. I just looked at everyone in that room and hoped their babies would be okay. 

I went into labour naturally and Rowan James Thornton was born at 6.15am on his due date: 08.07.23. He was so perfect. We heard his tiny cry and saw him open his eyes; something we never thought we would. The midwife took lots of photos and videos and we are so grateful for that. I love that we have memories of him being alive. It’s something we didn’t know we’d have. I had been so scared that he would die during the birth. We had some time alone just the three of us and Rowan passed away peacefully in my arms at around 7.30am.

It was so much more than we were expecting. I’d spent the last 8 weeks imagining every possible scenario and I felt this huge wave of relief. I was so grateful for the time we had with him, and I finally knew the decision we made was the right one for us. 

I can’t ever thank the midwives who looked after us enough. They were so compassionate. They took beautiful photos of Rowan. They took prints and clay casts of his hands and feet. The whole time they chatted away to Rowan as if he was a living baby. They treated him with love and dignity.  

I imagine if we hadn’t have known about Rowan’s kidneys, it would have been a very different experience. It was still extremely difficult, but we had prepared as much as we could. We didn’t have a post-mortem as we knew why he died. We knew there was nothing anyone could have done to save him. We have no unanswered questions, and no one is to blame. Some days are harder than others, the grief comes in waves. Rowan’s death will never be okay, and it will never be fair, but we had let nature take its course and I find peace in that.