Tuesday, July 15, 2014

an open letter to the NHS

It’s been about a month since I got the post mortem results explaining {somewhat} why Molly died.

In that time I’ve felt sadness, gratitude that Sebastian didn’t suffer the same fate. I’ve also felt anger and extreme frustration. It’s taken some time to grow the balls to write this, but here goes.

To Whom This May Concern at the NHS

In time, I might be able to find out who to direct this to, but for now, consider this an open letter to the chief executive, all heads of sonography, high risk birthing unit, the board.

In order to save you the long story, attached is my NHS number so you can delve through my now massive medical file you own. One of my twins died in utero at 34-35 weeks.

‘Oh here we go,’ you say. ‘A letter from a grieving mother with an axe to grind.’ Perhaps let me start by saying this: the expert staff who looked after me, my baby, and who guided us through our tragic circumstances at Chelsea & Westminster Hospital were wonderful. I saw so many midwives, consultants, neonatologists and doctors during my two week stay there, it’s difficult to call out specific names. They know who they are, and while it was the most difficult life-changing two weeks of my life, I wouldn’t have got through it without the expertise, kindness and help of these people. The obstetrician who I counted on to deliver my twins, give me the post mortem results and advise me the best way in which to give birth, was nothing short of phenomenal.

This is not a letter about how awful I think the state health system is, far from it given the assistance my husband, myself and my living child received. What I’d like to address specifically is the frequency of sonographs/ultra sounds, specifically with reference to multiple pregnancies. From the moment I found out I was carrying twins (7 weeks) I was told that twins are high risk. Higher risk of everything from pre-eclampsia, to miscarriage and stillbirth.

Mothers of singletons and twins are flooded with warnings from the get go, especially about the first trimester. Usually most mothers sigh with relief at the initial 12 weeks come to an end - no more nausea and suddenly risk of miscarriage falls dramatically. But twin mothers are still plied with warnings: basically lots of shit can go wrong when you carry more than one child.

As a result, twin mothers are offered more scans. Specifically, three more scans. I carried dichorionic diamniotic (DCDA) twins, which is supposedly the least risky situation when it comes to multiples. This essentially meant that they each had their own ‘rooms’ and placentas, while the seriously risky twins who share amniotic chorionic sacs, who share placentas are given scans from 16 weeks, every two weeks. This is because of risk of twin-to-twin transfusion, cords wrapping around necks, etc etc - this I know.

I got an additional three scans every five weeks from 20 weeks. Now, before you throw a load of data towards me about how many DCDA twins don’t die in utero, please hear me out. I’ve been told that it’s not a money issue, it’s a need issue. Do mothers of DCDA twins need to be scanned as frequently as those carrying monochorionic/monoamniotic twins? According to your data, no.
Because perhaps only one mother out of 500 has a stillbirth, so unless there’s reason for concern, additional scans don’t need to be offered.

My last routine scan was at 30 weeks. All the data pointed towards healthy growth for both my twins. While Twin 1 (Sebastian) had always been the larger twin, there was no reason for concern for Twin 2 (Molly.) She was smaller, but all her growth trajectories were within the normal range. I even asked the sonographer whether there was reason to be concerned as she was noticeably smaller. “No, she is within the healthy range,” after measuring her heart, head, abdomen. Why question the professional OR the data?

My next routine scan was 35 weeks. Five long weeks passed, and during that time, Twin 2 stopped growing. The post mortem estimated this to happen at 32 weeks. By the time 34-35 weeks rolled around, Twin 2 had died. Had they been MCMA twins, I would've had a scan at 32 weeks. The scan would’ve picked up that something was wrong and she was not growing. So while having them at 32 weeks is not ideal, such is the case with twins. They come early, and many have been delivered at 32 weeks before, in order to save their lives. Yes, they would’ve been in special care for a while. It would’ve been harsh and difficult. But perhaps I’d have two healthy twins here today. Who knows.

Nothing you do will bring Molly back. And this isn’t the intention of the letter. But I need to ask why you do not give all twin mother’s the right to to receive more scans in the latter half of pregnancy. Had I been given that option, even asked to pay for that option, I would’ve taken it. I would’ve had a choice, and because I mostly had no idea what was going on with my body during my first and first twin pregnancy, well it would’ve been nice to have had the choice.

While 1 in 500 mothers losing a twin to stillbirth just two weeks before they were due means nothing in the grand scheme of things, I am writing as that one mother whose child did die. And for any future mother of twins whose child may die because they didn’t receive enough scans. ‘Count the kicks,’ people told me throughout pregnancy. Unless you’ve actually been pregnant with two children at once, you will know then how difficult it is to tell whose foot or hand is which. Your stomach never stops moving, and you cannot tell who is who pretty much 50% of the time.

What is a scan really? It’s someone’s time, it’s money, but it’s a relatively short and painless procedure that could save a life. There’s a good chance it could’ve saved my daughter’s.

So, in short, I have a simple appeal: why not offer mothers the choice to pay for more scans. Offer them, give them the choice. To me it’s a short cut; an oversight not to offer more scans to women who carry multiple babies, whether there is cause for concern or not.

Laurian Dormer


churchaholic said...

I have nothing but empathy; I've not lost a child but my wife died at the hands of the NHS in 2002.

All I can offer is that grief is a tunnel and that if you've got to Rage you're somewhere near to the middle - fuck knows it's a mess of a journey.

Speaking personally you get to an acceptance stage of your loss but can't ever accept the loss - if that makes sense. 12 years after she died I think and pray for the mother of my 4 children every day; I can't imagine Molly will not be in your head for the rest of your days but hope the rage will lessen.

To be fair to the NHS they're under staffed and resourced but the brilliant people shine out as stars.

Molly may, or may not, have been saved by more medical intervention, my wife should have been saved by more medical assertion, but they weren't, tragic as that was.

The point here is that you have to abandon the what might have been and now embrace Seb's life as his, and his whole. I have no doubt that he'll always feel a part is missing (as will you) but your JOB is to bring him up as well as you can - and I have no doubt the both of you will but be very careful of creating a Molly cult.

Val said...

Wise words Churchaholic.

Vannessa said...

Great letter, Peas. I think it was good to get that off your chest and it is well-written. For what it's worth I think this is a very necessary part of your grieving and if that letter saves even one life it is worth it.