“The preliminary results of the study which Charlie and Oliver were enrolled in at birth are now being published”.
This sort of seems like an exciting statement, as we may have some new information that can help the future kids who are born too soon. But when I read it, and related it to the study it was referring too I felt less excited, and more scared.
When you go into labour at term you aim to follow your birth plan, and you change it as the situation changes and people come and go, but no one really puts you on the spot to make decisions that could influence your child’s entire life, and you’re expected to answer in a matter of minutes, because that’s literally all the time you have (generally speaking of course, I am completely aware of how many people this is also not the case for). When you go into preterm labour there are suddenly a great number of ‘studies’ being thrown at you. This is amazing, as it illustrates just how much we are still trying to learn about these wee babies, and it feels incredibly important to be part of research that will hopefully result in better care and better outcomes for children.
Charlie and Oliver were part of several studies during their hospital stay, some of which still continue for Oliver to this day; looking at what effect added omega-3 has on brain development, and at the developmental effects of protein intravenous nutrition in low birth weight infants.
The one that seemed easy at the time and now seems so incredibly hard is the cord clamping trial, and this is the letter that just arrived in the mail.
At the time I remember thinking (as much as anyone can think when their children are pushing their way into this world four months too early and are in a real hurry to do it) that any study we can be a part of is a good thing, that any way we can help develop the research will be beneficial. I think this comes partly from my medical background and partly from my constant need to do good and be generous??
We signed up. To be honest, thinking back I don’t even know if William and I even talked about it, it’s a total blur. But we signed up.
It is a good study, fully randomised so both Charlie and Oliver had equal chance of having immediate or delayed cord clamping. I was “lucky”, in so much as you can be lucky when you’re entire world is falling apart, that I did not require a C-section and out they came (that is a story for another day). Charlie; immediately clamped and rushed to resus and intubated. Oliver; 60 second delayed clamping, where he lay, curled up in his little sac on the bed, as everyone hovered around him ready to rush in when that timer went off. Which they did.
And I didn’t think about it again (okay, that’s a lie, but it definitely got pushed away every time thoughts came through, pushed far, far away).
Today I read the letter.
The preliminary results say that there was no difference between immediate and delayed clamping on the number of babies who survived without major issues to 36 weeks gestation. However, it also said that the study found that delayed clamping might have an impact on the number of babies who do not survive to 36 weeks.
And that is the sentence that throws us right back into it all again.
I know how research works. I know that might means that it just as easily might not. But I have also spent a lot of time thinking about how things might have been different. I know that we will never know the exact reason that Charlie’s brain had such a significant bleed. I know that we were helping future kids. I know that they had an equal chance of both being delayed, or both being clamped. I know all of this.
But when it’s dark in your heart and the guilt and feelings of failure that you’ve managed to push deep down over time read that sentence they wonder, maybe if he had had delayed clamping, maybe it would have been different.
Maybe Oliver would have someone to play on the see-saw with him, and someone to ride around the block with.
Not a day goes by without one of us thinking we failed our kids, we couldn’t protect them, that it’s our fault.
I know it’s not. Well, I know that it’s not okay to sit and dwell on these thoughts. Maybe something was my fault. But if I let that thought move in I would never open my eyes again, I would bury myself under the house and let the earth swallow me whole. So I know to tell myself it’s not our fault.
I know that the study could have absolutely no evidence of relationship between clamping and IVH. All I’ve read is the letter. I could search for and find the published articles and delve deeply into it, but I’m not going to.
Because when you live every day with a heavy, grey cloud of sadness hanging over you, you try really hard not to look for ways to make it heavier, and greyer and cloudier.
Now I’m sitting here wondering why I even felt the need to tell this story. I guess because other parents will have got the letter this week and I want them to know we get it, we feel it and if this week feels harder than last week, just know you’re not the only one. And maybe so that I can say, even after all of this, all the worry and wonder and heartbreak; I will still sign up to studies. And I hope some of you will too.
Because although Charlie didn’t leave a physical footprint on this earth, he helped some future kids, and that is a legacy in itself.