Saturday, 5 March 2016

Maximising your baby's survival potential

Or: How to have more time with your baby


Babies with trisomy 18 don't live long, apparently. If you believe half the medical professionals, if you get a week you're doing well, and a month - well, be grateful. Those who live a year are anomalies and you'll be told to be 'realistic' if you mention them. They haven't heard that there are actually adults with trisomy 18 - tell them the oldest known survivor was 50 years old and you'll be called a liar.

However, they're not entirely wrong: the stats don't look good. The median survival in the UK for babies born alive with trisomy 18 is 14 days (Wu et al 2013). 3 month survival is only 20% and 1 year survival is 8%. Not forgetting the 72% pregnancy loss (miscarriage and stillbirth) rate from 12 weeks until term. However, when you're pregnant, poring over these dire stats, remember these stats are based on no care. No pregnancy management, no post birth care. Of course the stats look dire. I believe we call this a self-fulfilling prophecy.

So how can you beat the survival stats? How do you get some time with your baby? How do you maximise the chances of lighting those candles on the first birthday cake? Or even better the 10th birthday cake? I make no promises; even with the best care some babies won't survive. But for your best chance, here are some tips just for you (and your doctors).

  • Maximise your placental function. If you have low PAPP-A, discuss taking low-dose aspirin with your obstetrician. Antenatal care and good nutrition may help too.
  • Get good pregnancy management in place. This means regular scans, including dopplers, to monitor growth and placental function, and from 33 weeks onwards, regular CTG monitoring. Check out the Fetal Medicine Foundation's Doppler Ultrasound course to get up to speed on dopplers and signs of stillbirth. Personally I'd recommend at least 3 weekly scans until 33 weeks, progressing to 1-2 weekly thereafter. And at least 3 times weekly, but preferably daily CTGs from 33 weeks. The Perinatal Institute recommend 3-weekly scans for high risk pregnancies and you are high risk, so don't settle for less that that. 
Daily CTG monitoring and a cupcake
  • Time your delivery carefully. Having your baby later, especially after 40 weeks, seems to mean they are more likely to survive. It seems that the later your baby is born, the more likely they are to survive and the longer they are likely to live. The experiences of trisomy parents also seem to suggest that they need less breathing support. Babies born before 37 weeks have very poor outcomes indeed. Keep your baby inside!
  • On the other hand, keep a close eye. Stillbirths are also very common in babies with trisomy, so keep your baby inside, monitor closely. If the dopplers or CTG monitoring show problems then you may need to deliver earlier. Some doctors will recommend early delivery because the baby is growing slowly: plot your baby's weight on the relevant T18 growth chart to see if that's true. If they are growing well on the T18 growth chart and the monitoring looks good, you may have bought yourself some time.

Deciding about induction.
We got to 39 weeks! 


  • Plan your birth choices carefully. 40% of babies with T18 die in labour. Either a c-section or a carefully monitored vaginal delivery with agreement for c-section in the event of fetal distress is needed. Make good birth plans and ensure they're agreed.
  • Fight for full treatment. Babies who don't get the breathing and feeding support and surgical repairs they need, die. This should not be a surprise. The principle you want agreed is 'no care will be denied to my baby because of trisomy 18'. Be prepared for opposition; find some allies and get ready to fight; but babies who get full treatment smash the survival stats. 25% of them get a taste of that first birthday cake.
Rumer got full treatment!
And came off a ventilator!
  • Find some trisomy friends. Join the support groups and get some daily inspiration and encouragement. These people know what you're going through and they know more about gestational age, types of birth, breathing support and how badly doctors can behave than anyone else you'll meet.
  • Be encouraged by the survivors. You can read many of their stories here and here.
  • But also be encouraged by those who fought and lost: their parents don't have regrets! Their stories are in the same places.

Good luck!

1 comment :

  1. Nice share. I really enjoyed reading and knowing effective ways to maximizing a baby's survival rate. I think many people will find courage after reading this post to support their baby's in critical condition.

    ReplyDelete

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