I wrote some of this blog when I was in hospital with Bhai, I edited it again a few days after and then updated it recently at the bottom. It is about our request that Bhai’s body be donated for medical science.
The layout of the room was the same, the hospital “snack box” was the same and we were back making the same decisions that no parent should ever have to make for their child. Again. Twice in 8 months.
Our options were a private funeral or a hospital funeral. A private funeral would mean us going to the funeral directors and planning another funeral for our second son. Holding a funeral for our second child. Our second child’s funeral in the space of a year.
The alternative was a hospital funeral- either burial or cremation. This is a group funeral with all the babies who die within a certain time period. We would not be allowed to attend but we could be told the date. We wouldn’t get any ashes from the cremation whether we had a private or hospital funeral.
Roy was leaning towards a private funeral. I sat in shock and despair – disgusted at the cruelty of the world. I still am. I wondered how we would possibly survive either of those options.
One of the many decisions we had to make was whether to have a post mortem – we knew all the decisions we had to make because we had already done this once. The consultant went through the post mortem form with us – it didn’t take long. We had done it before. Then I saw the box I recognised for special considerations. I had an idea.
I asked Roy how he would feel about donating Bhai’s body for medical research and teaching. Roy and the consultant both seemed taken aback. Maybe it is because it isn’t a stated option and no one mentions it. For me it’s just how my brain works, I’ve worked in research for years and recognise its value. The consultant explained that many of the baby’s bodies used for teaching purposes are from the 1940s. People very rarely make the decision to donate their baby’s body. It isn’t a question that is asked or an option given for ethical purposes.
Roy agreed, I double, triple, quadruple checked with him. He had to agree wholeheartedly without reservation obviously for us to proceed. Roy studied biomedical science so he knows how respectfully the bodies are treated by staff and students alike. I felt so sure. What is weird is that both times when I have been in the unbelievably messed up position of making decisions following the death of my children I have been so sure of things. I’m a woman who can’t ever pick what to eat from a menu – then when I do, I regret it and have food envy.
Roy was amazed by my decision and that I thought about this. For me, I have read a fair amount of research on stillbirth and neonatal death since Lenny died (as soon as we were home I would lie awake in the early hours of the morning reading medical journal articles looking for answers about how this happens and why) and my overwhelming feeling is that we know so little, so many babies die and not enough is being done about it. We know very little about the causes of babies dying in the second trimester- we can’t begin to find solutions until we find the causes. Second trimester losses are around 1-2% so not particularly rare especially judging by my new standards of statistics- those numbers may as well say “definitely will happen.”
Over my years working in research, people have asked whether it really makes a difference and have commented that research feels irrelevant to their lives. I disagree. I think a lot of people don’t realise that taken for granted knowledge that we use in our everyday lives isn’t “common sense” most of it came from research in some form or another. Also – in this space it has made a difference – pregnancy and child birth hasn’t got safer than hundreds of years ago – medical science and care has improved. This is why fewer women and babies die, its not magic its science.
Other people see it as selfless. Honestly I don’t see it as selfless at all – I simply could not face organising another funeral for my second son in the space of a year – or ever actually- no one should ever have to think about a funeral for their child and definitely definitely not for their children! We had met and held Bhai – I wanted him with his brother and with us. As Bhai was so tiny and his bones hadn’t become very hard yet, we were told we wouldn’t really get any ashes to scatter with Lenny’s. So of all the diabolical options in the most awful of awful times I chose an alternative.
Bhai will spend more time at university than I have and at the same University where his dad and I met and studied our undergraduate and post graduate degrees. His entire existence symbolised hope for us, he showed us there was life and love after Lenny. That we could hold Lenny in our hearts and have more love for another child. Donating his tiny body seems like a hopeful act at the bleakest time imagineable. I hope some clever people are able to find things out to prevent babies dying. I hope Bhai can help them and give some answers to save other babies lives. I hope no one feels this searing pain like we do – especially not twice!
We both feel at peace in this decision. But please don’t tell us we are amazing or inspirational- we don’t want to be those things we want to be normal parents with both our boys with us. Bhai’s body should be safely housed inside mine for another 4 months and then it should be warm and soft close to mine and his dad’s forever. Well maybe not forever that would be weird but ya know.
Since Bhai died, someone told me their younger siblings wouldn’t be here if people like us hadn’t donated their baby’s body to science. We made the right decision. I just wish more than anything it wasn’t ever a decision we had to make.
Update: I wrote the above a week after Bhai died. I’m unsure how my brain was functioning. Things have changed but I have left the blog as it was as it gives an authentic view of my thoughts and feelings at the time.
Since writing we have learned that we could not donate Bhai’s body. The hospital and university were incredibly grateful for our offer I am told but because of strict legislation they were unable to accept it. However, students were present during Bhai’s post-mortem and microscopic slides were taken which will be kept for future teaching.
So he did contribute to teaching and knowledge as we wanted him to but he isn’t at the university like we envisaged- so more like he went there, hung out with loads of people, never used his library card and then left….. more like his dad’s approach to university than mine!
This news really hit me hard. In ways I’m unable to explain really. I guess for me the prevalence of babyloss in all its forms is simply not matched by research efforts and I feel frustrated that this was a way we could contribute. I do understand the reasons why (if you are a fellow nerd and want to know why read about the Bristol scandal). It also meant …. We had to decide what to do about a funeral.
I couldn’t bare to call the funeral directors – I actually asked a friend to do it and gave a list of questions. FYI if you are a person and someone asks you to do this for you it’s because they think the world of you and because they know beyond doubt that your, “let me know if there’s anything I can do” is real. If you’re a person who is asked to do this and you do it. You’re incredible. If you’re a person who is asked to do this and does it whilst on holiday and doesn’t even let the bereaved mum know you’re on holiday so that they don’t feel bad you’re a badass superhero – thanks Niamh 🧡💜.
So – the funeral directors remembered us and Lenny – I’ll add them to the list of people you don’t want to be on first name terms with. After much discussion and based on the information we had got from Niamh we felt that organising another private funeral might break us. In all honesty it was easier to write and organise Lenny’s as we had got to know him so well. I didn’t feel I could do that so well for Bhai. As we spoke about it it started to feel like a scaled down version of Lenny’s day. And at the end of it all we would get no ashes. And at the end of it all we still wouldn’t have Bhai or Lenny here with us physically.
We didn’t want Bhai’s funeral to be lesser than Lenny’s just different. So we decided to scrap the private funeral idea. Bhai will have a hospital funeral with other babies and when we find out the date we will go to the hills with the dogs and think of him and his brother. We will light a candle. I’m not sure what else we will do. We don’t feel as parents there is enough we can do ever. Our parenting journey has been so deeply painful that all we can do for our boys is plan their funerals and try to honour them as best we can.
So Bhai has been to university and now I like to think he is having a fire pit with his mates. Something we used to love doing. In the before times. When our biggest concern was whether someone had drunk too much of Roy’s plum rum to be close to the fire.
I hope those students who learn from Bhai go on to do something great. After the fire pit he will be free to roam the hills with his brother forever….. forever proud of my smallest boy 🧡💜🧡
Second Update – we now know that Bhai’s funeral will be in January. This is difficult for a number of reasons – it is a long time after he died, it is after his due date, it is the same month as Lenny’s funeral was and of course – we are out of the country. When we know the date – we would appreciate some support from family and friends just to recognise the day – light a candle, go for a walk, do your ’27 minutes’ and think of little Bhai and all the babies gone too soon.
As for me and my frustrations with the paucity of research – we have now set up Lenny’s Legacy as a charity – part of our awareness raising will be about lifting the profile to push for more research. There are complex reasons why research is challenging with pregnancy – challenging doesn’t mean impossible though and the biggest barrier seems to be funding. I will use my voice wherever I can to advocate for my sons and all the other families. I truly believe that research has the capacity to significantly reduce the number of babies who die.