Kicks count! For trisomy babies too

Most of us who become pregnant in the UK will have heard of the charity Kicks Count, which works to raise awareness of stillbirth and to encourage mothers to monitor their baby's movements and to seek help if there are any concerns. If you haven't heard of them, I encourage you to check them out.

Today's article, however, is about how we can use movement monitoring to reduce the risk of stillbirth in trisomy 18. Very often on trisomy groups, I hear mothers remark that their baby is moving less today, and the next we hear, they've had a stillbirth. This is often because of the extra difficulties in monitoring movement in trisomy 18:

• Babies with trisomy 18 tend to be small, so their movements are correspondingly hard to detect.
• Babies with trisomy 18 tend to have significantly reduced movements compared to babies with typical chromosomes. This may be due to reduced muscle tone in babies with trisomy 18.
• Mothers expecting babies with trisomy 18 often have extra amniotic fluid (polyhydramnious), which can make movements harder to detect.

In addition, mothers of babies with trisomy 18 may find that they are given no guidance on monitoring movements, or when and where to seek help, as physicians do not anticipate providing any interventions for these babies and are willing to accept the risk of a stillbirth.

So here is our guide to monitoring movements.

From when should I feel movements?

This is different for every woman and depends on whether this is your first or a subsequent baby. Most women report feeling their trisomy 18 baby move within the typical time frame (16-24 weeks), but some women who have had previous babies feel their trisomy baby's movements later due to their small size. If you develop early polyhydramnious, this may also delay you feeling movements.

How many movements should I feel?

Get used to your baby's normal pattern: that is your baseline. There may be a pattern of fewer, less frequent movements than from a typical baby. It is more important to recognise your baby's normal pattern than to count a particular number of movements each day.

What if my baby's movements are less frequent than normal?

If your baby is moving less often than normal, you should head into your hospital for monitoring. Most hospitals provide a drop-in service for this. It may be called a Pregnancy Assessment Unit, Day Assessment Unit or Antenatal Day Unit: check with your midwife what your local hospital calls their service. You should anticipate a wait. The hospital will usually perform a CTG monitoring session to assess your baby's heart rate pattern, and may suggest a scan. If you don't know where you should go, call your local labour ward and check. There will be someone there 24/7.

I'm only 24 weeks - do I really need to go in and check?

This is up to you. Many trisomy families, knowing the extremely high mortality rates for premature babies with trisomy 18 (in many studies none survive until discharge), choose not to opt for interventions before a certain gestation. We, for example, had chosen not to opt for interventions until 33 weeks. If you have chosen not to opt for interventions, then why would you go in for monitoring?

Here are some reasons why you might choose to go in for monitoring even if you are at a very early gestation:

• You would opt for intervention at this stage, so if your baby was in distress, you would want an immediate delivery and neonatal intensive care even though your baby is unlikely to survive.
• You want to meet your baby alive, even briefly, so you would choose to opt for immediate delivery if your baby is in distress, even though you would not choose to opt for intensive care at this stage.
• You want to know if your baby is in distress or dying, as this affords you time to come to terms with this.

If you have no movements at all, or reduced movements for more than a day, you probably should go in regardless of your intentions regarding intervention, since if your baby has died, you are at high risk of infection and other complications if this is not detected and managed soon.

CTG monitoring with a cupcake

I have no agreed plan for neonatal care yet, so if my baby is in distress they will do nothing. Why go in?

Despite your lack of an agreed plan, you can go in for monitoring and hopefully be reassured that your baby is fine and have time to sort your plans. If you go in and your baby is not fine, you can then immediately escalate to get care plans agreed urgently. If necessary, an emergency court order can be sought, depending on your wishes.

I have polyhydramnious OR my baby is small OR my baby is in an awkward position. I'm sure that's why I can't feel them. Do I really need to go in again?

You may well be right in thinking that's why you can't feel your baby moving so much, but you can't be sure that's the cause. Often, mothers who have stillbirths have had other episodes of reduced movements prior to the final one, which are blamed on these complicating factors. However, it is worth getting every episode checked out. Yes, it's a drag to spend many hours in waiting rooms only to be told that your baby is fine, but it is worth it in order to pick up the one time they're not.

I've been three times in the last week; I'm sure the midwives think I'm an attention-seeker, and they roll their eyes when I walk in. The baby's been fine every time. I don't want to go again.

You may be right about the midwives or you may not. Either way, it is not they who are the priority here. We went every day for monitoring for weeks and I'm sure they got fed up with us (although they didn't show it). You are probably the most high-risk woman for a stillbirth they have at the moment. Do not feel guilty for a second. Go in every day, twice a day if you need to. Ignore any negativity you feel. It is you and your baby who matter here, and 30 trips to detect the day there is a problem is worth it.

I have a home doppler and my baby sounds just fine on that. Surely I don't actually need to go in?

Home dopplers are lovely, especially in a trisomy pregnancy - it's nice to hear your baby's heartbeat and to feel connected with them. However, they cannot reassure you as to your baby's well-being, as:

• It is easy to confuse placental and fetal blood-flow, so you may not be hearing your baby's heartbeat at all.
• If you do hear your baby's heartbeat, all it tells you is that it is currently present: that they are alive. It is does not tell you their condition: you need to look at aspects of the heart rate that cannot be detected on a home doppler to be sure a baby is in a good condition. You want your baby to receive any interventions while it still has a heartbeat.
• A heartbeat on a doppler is such a poor predictor of fetal well-being that NICE guidelines recommend that midwives do not use them at every antenatal appointment for any reason except parents' enjoyment.

If you have reduced movements go in, regardless of a heartbeat on your home doppler.

The only times you may choose to use your home doppler should be:

• For your own pleasure in hearing your baby's heartbeat.
• If you suspect your baby has died and you want to check briefly at home before you go in for a scan to confirm. (Do not delay at home, listening with your home doppler, if there is still a chance to save your baby.)
• If you are at a gestation at which you are choosing not to opt for interventions and you like to hear your baby's heartbeat to confirm they are still alive. (However, if you have reduced movements for more than 24 hours in this case, you certainly should head in to get it checked out, as detecting a death early reduces the risks to your own health.)

In short, the advice to mothers expecting babies with trisomy 18 is:

• Go in for monitoring if you feel your baby's movements are reduced.
• Go in for monitoring if you have any concerns regarding your baby's well-being.
• Go in as often as you feel you need to.
• Go in again, even if your baby was fine on the last 1 or 10 or 100 monitoring sessions: today could be the one for which they're not fine.
• Do not use a home doppler as reassurance as to your baby's well-being.
• Go in even if you feel judged.

One thing I have heard from mothers expecting babies with trisomy 18 is that they are not treated the same as others when they do go in. That although they may be at 33 weeks gestation, their baby is not properly monitored and their concerns are dismissed. This is NOT acceptable. Insist that you want full care as per any other baby and that you will escalate if it is not given (PALS, Supervisor of Midwives and Manager on Call are all good places to start). If you go in with reduced movements, especially from 28 weeks gestation onwards, a CTG should be standard. If they tell you that your baby is fine after a quick listen with a handheld doppler, or they do a CTG but tell you that heart rate anomalies are fine because your baby has trisomy 18: escalate.

If you need any more convincing, here are the RCOG guidelines on Reduced Fetal Movements.